Sometimes I swear the world is trying to make me crazy (or maybe thats crazier?). And I am so SICK of all this stupid stuff thats been going on lately.  On my 101 in 1001 list (linked over in the side bar) I had write three letters of complaints as one (believe it or not I used not to be such a good advocate) and three praising good service.  I’ve sent more than three complaint letters since I set that goal in 2006.  But as for letters praising good service?  Nary one.

Also, it please me most of the time to be an advocate and stand up for myself and others.  I do think it’s very important.  But just lately I can’t help feeling and/or getting the impression that it’s making others think of me as something of a bitch who is never happy.  Being a constant advocate drains me a little at times too and now is one of those times.

I spent 20 minutes on the phone trying to book my assisted train travel to go to Milton Keynes on Wednesday.  The woman was insistant that the way I want to go (changing at Oxford and Coventry) wasn’t valid and that I had to get a train to Paddington, travel across to Euston and go that way.  I asked her how I was supposed to travel across London given that the tube basically isn’t wheelchair accessible.  She put me on hold and then came back saying that her colleague agreed with her that the tube is accessible at most stations, I can have help, they do have ramps and it would all be fine.  It would also be really, really difficult for her to arrange for me not to go via London.

I told her that as far as I was aware the tube wasn’t accessible and I didn’t want to chance it, please make the arrangements I had asked for.  She suggests I take the transport for London phone number and call them where they would tell me it was accessible and I could do it.  If they said it wasn’t, and she really did *think* it was accessible, I could call her back.  The arrangements I wanted would be difficult to arrange.

This, clearly was bullshit (being I wanted nothing more than I usually had I just didn’t want to go to fucking London and it;s stupid tube system) and I pushed her until she made them - she had to do it as two separate journeys - one from here to Oxford and one from Oxford to MK as otherwise her computer would explode or some such rubbish.

Sorted.  But then again she tells me the tube IS accessible she THINKS and suggests I call them (she’ll give me the number) so I can AVOID the HASSLE if I want to do the journey in the future.  At this point I should have told her the only hassle about it was her being so bloody minded and argumentative.

I told her I didn’t want the number.  And then I went onto the transport for london website.  Neither of the tube stations I would have to use to travel across London have full access - they are marked on the accessibility map as having no access in and out of them from the street but you may be able to change trains between certain lines.  Also, they don’t do ramps or booked assistance - the accessibility page warns that in some places the gap between train and platform can be 12 INCHES HIGHER!

Oh and out of 275 tube stations in London?  48, that’s FORTY EIGHT, have step free access from street to platform.

It’s a bloody good job I stuck to my guns.  But why she couldn’t accept what I wanted in the first place.

Maybe I should see if I can get one of those heavy old NHS standard wheelchairs and some bondage stuff (I hear they’ve got some good handcuffs in there lately!) from Ann Summers.  Perhaps if I tie the idiots I’ve been dealing with lately done so they actually are WHEELCHAIR BOUND they might get it.  Or at least stop be so bloody minded and start being more aware.

I deal with the public a lot and I know that the customer isn’t always right but clearly what she doesn’t know is that when I am the customer I AM always right.

Today is really, really weird.  And it’s no where near done yet.  I don’t think that bodes particularly well and I also don’t know what to think about today.

Had a bit of a minor panic this morning.  I didn’t feel like I could do something I needed to.  But I pulled it together and did it.  I just kept reminding myself that I’ve done it hundreds of times before and the last time really really sucked but that didn’t mean it would be bad this time.  And also I kept remembering that if I would have to do that again and if I didn’t do it today I would have to do it later in the week.  Which wouldn’t be any easier so I may as well get the suckage over and done with.  Most importantly it was no where near as bad as I thought it would be - it wasn’t even bad at all.  It was just, normal.  Plus, minor compliments.  Always helps.

Apparently I looked really sad and fed up and worried this morning in the bureau.  I got asked several times if I was ok and in the end asked if I didn’t look it.  When they asked if I was actually sad/fed up/worried I just said “little bit” and got on with the day.

Truthfully I’d say the thing I actually am is TIRED and BUSY.  Could probably add in a side order of PISSED OFF now too.

Oh and one of my colleagues said she didn’t think she’d ever seen me happy and cheerful.  I told her she should see me on a Wednesday.  One of the others told her that “She [Emma/me] tells it like it is.”

But, oh, JOY.

Then I got home to strange post.

Back in February there was the incident where I found a guy collapsed in a disabled toilet.  He’d pulled the alarm cord but no one had come and he’d been there an hour. When I told a member of staff they said it “wasn’t their problem” (this entry has the full story).  I wrote and complained but never heard back from them.

Until today when I got a letter dated last week.  In response to my letter sent in February.  It’s a total fob off letter.  But how bizarre to finally get a response?!

I’ve had an interesting day today.

The short version is this morning was stressful and blah.

The afternoon was full of a couple of unexpected moments of joy within the mundane.

And then I went out training with Elisa.

Both of those things took away from the stress and the annoyances and allowed me to leave them behind where they belong.

We walked for a while after we met and then we decided to walk in the direction of the pub and the few shops on the estate.  Fine.  My chair was making a bit of a strange noise as though something was catching but neither of us could see anything it was pretty much wheeling fine (I’d wheeled through a huge thing of water right before it started doing that and after a while it stopped and wheeled as it should so I figure it was just the wet).  Elisa uses her manual chair a lot more than I use mine and I was slightly babying my chair because of the weirdness so she was a way ahead of me but not far.

This woman came up behind and asked me if I wanted her to help me and I said “No, thank you, I’m fine.  I’m trying to get fit.”

She laughed at that.

The most annoying laugh ever.

And she made some random comment before walking off.

I caught up to where Elisa was waiting outside the pub and we decided a cold drink and splitting a bowl of chips in the pub would go down just nicely so we did and we chatted.  Then I wheeled myself home.  It was tiring given that it was pretty hot but it was really fun and relaxing in a way too.

I can’t really describe how the incident with the laughing made me feel.  I suspect she was probably just embarrassed or didn’t know how to deal with my turning her down.  But it was tough to deal with.  I would never laugh at anyone telling me they wanted to get fit be they a TAB or a PWD.  Yet she laughed at me.  My wanting to get fit is just as valid as anyone else’s.

Elisa hasn’t always been disabled just for the last three years or so I think.  We’ve known each other roughly two years so that must be about right.  She commented when we were in the pub that before she became disabled she never realised how much of an effect other people and their random comments etc can have on you.

And I don’t know if she’s right or not, having always been a PWD it’s an experience that is alien to me.  So maybe that woman didn’t realise the affect she would have on me.

But that doesn’t make it any easier to live with.

Someone I know walked up to me today and went “I didn’t know you were having a baby.”

Needless to say I just sat there and gaped at her and went “what?! I’m not.”

And they said it again.

I gave them a look.

And they went belatedly “i’m joking.” But if they really were joking they should have said that sooo much sooner.

Crash and burn.

They claimed it was a joke because I was knitting and I was knitting with really bright (hot) pink yarn and apparently people only knit with pink yarn when they’re knitting for a baby girl?! so she thought it was funny. The yarn is sooo totally not a baby colour.

I replied that it wasn’t funny.

They said they thought it was. And so did someone else when they saw me annoyed and us talking.

I really don’t find it funny. Particularly not as I think that is something which is unlikely to ever happen to/for me. And I would love to have kids but most of the time I’m ok with that.

So thanks for that, love, I was already feeling a bit off about myself. And now I feel really bad about myself.

If I were to write a list of 101 things not to joke with a fat girl about, that would be number one of that list.

“They’ll want people who are really into sailing.  And obviously they”ll want to film a wheelchair user.”

“Yeah that’s why they asked me - because it’s the most visually obvious of our disabilities.”

“No - they asked you because you’re a mouthy cow.” 

- My mother’s take on why I was asked to be filmed sailing for The People’s Millions.  It’s nice to know she has a high opinion of me, isn’t it?!

And yes, I’m more than likely going to be on TV again.  It’s all really rather exciting! *squees loudly*

…of milk!

I decided to do a spot of online food shopping and arranged a delivery from Tesco for this afternoon.  They were here even before my delivery slot started so they get lots of brownie points for that.

They brought everything I ordered with two exceptions which they told me about.

And they brought me an unexpected “present” too…

12 pints of skimmed milk.

I didn’t order any milk.

They didn’t charge me for it.

If I had ordered milk I would have ordered 2 pints of semi skimmed.

but no, it’s just there… 12 pints of skimmed milk.

No rhyme, no reason… just milk, milk, milk, milk, milk, milk, milk, milk, milk, milk, milk, milk!

And it’s only 1st October!  And it’s looked a lot like Christmas for about two weeks.  Christmas stuff every where in the shops - completely ridiculous.  It sort of makes me mad in a way and it makes me feel really old but I can’t help thinking that it wasn’t like this when I was young (”back in my day…”).  The end of October is more than early enough to start buying sweets and stuff (or even too early still). if I bought them now I would eat them.

But it’s not just shops - my mother brought the Christmas Cake yesterday.  On the last day of September.

In other news, I didn’t go to work today.  This is the first time this year when I maybe could have gone to work and didn’t.  Which is a good thing but also makes me feel bad that I stayed home.  Of course I knew I would sit there wishing I was home if I went.  So instead I stayed home worrying and thinking I should have gone.

I’m still in my PJ’s (with a jst fleece over the top) and I’ve been sleeping lots.  it’s all been rather lovely and I’m feeling better than I have since Thurs.  Currently trying to convince myself that I do not need to text my carer and get her to bring me chocolate and coke when she comes.  The lower number of the scales will be much nicer on Wednesday than the treats would be now, right?

My mother strikes again.

We went to my cousin’s wedding yesterday so I got myself all dressed up (photos to come) and then went to the door to let mum in.

“Hello, you look nice. Where’s your walker?”

“in my bedroom.”

“and your chair, where’s your wheelchair?”

“I’m sat in it.”

“Are you? [pause] oh yeah…”

Sometimes I really wonder where my care agency find the people it sends to me.

My sister frequently tells me to hurry up (and occasionally shut up)because I am “wasting her life”. It’s not really a phrase I use but I was tempted to when it came to my new carer tonight.

So somehow the conversation got onto the fact that she prefers to be known as a support worker not carer and that my agency refers to the people receiving care as clients.

Personally I tend to use the term carers, occasionally support workers. I don’t like my carers being referred to as “looking after me” or any similar type things. I look after myself, they just support me with things I find difficult or which I can’t do.

And I’m not a service user, I am client. Don’t really know why I don’t like “service user” but I don’t. I suppose the only good thing about it is that it’s better than “patient”.

Anyway.

So this new carer type woman was wittering on about terms that are used to describe the clients and the carers.

She is a support worker, not a carer. And she has “people who employ her.” not “clients.”

Because whenever anyone talks about “clients” it makes her feel like they think she is some sort of “lady of the night” to use her words.

Didn’t really know what to say to that but oh my god did I wish she’d shut up!!!

I just checked my Akismet (WP’s auto spam filter) just to be sure that there wasn’t anything in there that should be.

I emptied my spam on Tuesday, there weren’t any yesterday. Now I had 59 identical spam comments, from the same name, the same url but a few different IP’s which had been left every two to three minutes for over two hours.

I’m sorry but that’s just pathetic.

So pathetic that instead of being annoyed I feel a little sorry for the spammer.

ain’t that sad?!