This journal only really still exists for commenting and communities.  I think most people already know but just in case (I have been doing the LJ thang rather a lot lately) my actual blog is now <a href="http://www.wheelchairprincess.com/blog/">here</a>

Just wanted to post here quickly... I still post in my Blog on diaryland most days but thought I'd fly by here to say hi and I'm still alive.

Things are good but I am hugely, hugely stressed out whihc is not so good.

I'm moving house on 19th Dec!!!!!!

To a brand new flat that was just built and no one has ever lived in before me. WoooooHoooo. And it's been adapted as it was built to meet my needs. Yay yay yay yay yay! Mum and I are going to view it on Monday and I'm just hoping against hope that it's as good as it's meant to be and it doesn't fall thru.

I can't wait to move and I'm looking forward to it but I'm finding the process of getting sorted out stressful. I'm just trying desperately to ignore the fact that I'm moving house SIX DAYS BEFORE CHRISTMAS.

Urgh... but so, so good!

Think I worried a few people wiht my last entry... I'm ok, really!

I've been doing a lot of thinking about my life and have come to the conclusion that given I am able to be out and about a lot more than I am I should cut down on my online responsibilities and make the most of what I've got. I've also been finding that I don't really enjoy the "feel" of livejournal and would rather stick with my diaryland blog, I have a lot of history there and it's a part of me now after nearly five years on and off.

My diaryland blog is at http://cyberpurple.diaryland.com (click to visit)

love, Emma

I have been thinking and have decided to stop writing updates in here... I'll still be writing on diaryland but not here. I've enjoyed writing here but feel like I need to reclaim my writing and this is stiffling me.

Firstly, a HUGE thank you to everyone who offered me support after my last entry.

Secondly, my Dad is, as my sister told him earlier this evening, a pillock. He didn't check properly before deciding the chair wasn't any good. It is fine!

I was devastated that this chair didn't fit me. But was able to work most of that emotion out into a very productive and good workout in the pool. Which was probably healthier for me.

Then when I got home, I decided to ask my carer to measure the wheelchair for me again. She unfolded it and commented that it didn't look like it was properly unfolded.

Her phone rang and as she was answering it I sat there thinking "yup, she's right. Maybe..."

This has a folding mechanism of two straps which you pull and it folds itself. It's designed so you can do it one handed.

My carer got off the phone and had a good look at the chair, one of the straps was tangled up and after she untangled it... it openned properly.

It's a little snug but perfectly comfy and IT FITS!!!

Finally ( look under here )

I'm not sure what's up but the one they sent doesn't fit me (the seat isn't wide enough). I don't know yet whetehr they sent the wrong width or whether I was recommended to order the wrong one. Unfortunately if the latter is the case there is nothing we can do.

I'm praying that this is their mistake not mine.

My Dad just called me and said he would be coming round later with something for me.

"Something quite big, with wheels" as he put it. I started screaming with joy at that point!!

ARRRRRRRRRRRRRRRRRRRRRGH! I'm SO excited!!!

I feel horrible.

Panicky and nauseaous and like i could hyperventilate.

Joy and fucking rapture.

Sometimes I could kill that guy who forgot to get me off the train... ever since I had that delayed panic attack that day I've had several mini panics and it's no fun!

The thing is I know that i'm making more of a big deal of this access meeting than it needs to be and that the panics are for nothing. But knowing something and *feeling* it are different things.

breathe Emma, just breathe.

time i went to work and then onto the access meeting.

I am feeling much better than I was yesterday... still a little nausea but nothing really noticable.

I've taken it quiet today... with the weather (rain, rain GO AWAY) it was for the best. I've made loads of graphics and I've also been watching Star Trek: Voyager episodes on DVD.

I really enjoyed chatting with my carer again tonight... I did discover that she lacks the ability to sit still however! hahaha

The graphics for the most part were for The Big Brave Banner Site. As before, if you can please go visit just one child listed on the banner site and leave them a note of support - your words could make their day!

I did make one graphic for my friend Lea's website tho and have the beginnings of one for me in mind as well.

Tomorrow I have work in the afternoon for CAB and then I'm leaving that a little early (10 mins or so) and heading to the Access Group meeting. Thankfully it's in the same complex as CAB so that's possible.

It's the first access meeting since I took over as secretary and I'm nervous! Wish me luck...

I’m just trying
To be me
So much more than
The girl they see

I might have this thing
They call CP
But that isn’t
What defines me.

I am different from you
But I think I have it best
I need a wheelchair and always will.

Now I am different
But eventually
You will be
The same as me.

Thanks to the great equaliser called life
One day you too will experience this kind of strife

When you are old
You will understand what you’ve been told

But for now
I will try and explain it somehow.
Yet it is difficult to show
That which I innately know.

I have to spend
My life of wheels
My CP will never end.

I can live with it
Or long to be without it
The choice is mine
To be made with help divine.

When I was a child
I wanted to die
Life with CP
Seemed too much for me.

Time heals
What was once a punishment
Isn’t any longer
Instead it makes me stronger.

If when you get old
Your health time steals
And you must spend your life on wheels.
Remember what you have been told.

Hold your head up high
It will become normal as time flies by
As you learn how to cope
Don’t lose hope.

I’m just trying to be me.
Can’t you see?
Being me
Happens to include
This thing called CP.

I feeling quite worked up today about disability awareness and the way people still treat others with mental/learning disabilities like second class yet harp on about wanting equality for disabled people.

I also wanted to write soemthing about people making comments like "smile it might never happen" and "don't look so sad." and depression. My Uncle told me not to look so sad today and i just wanted to scream "I have a chemical imbalance in my brain and probably a hormonal imbalance too. So i'm a little sad, leave me alone." but I didn't.

Basically the moral of this story is that you don't know people's circumstances. If you think they look sad or down it is much nicer to say something along the lines of "You seem a bit down, i'm hear if you want to talk."

The rest of this entry is lost to the abyss because I was talking to Shi and i lost my train of thought... Talking to her helped tho so it's all for the best. Thanks Shi, love ya!

Side note: I didn't take my meds for the better part of three weeks (well, two and a half i think). Today was the third day in a row that I HAVE taken them. yay.

I've set up a website to showcase my writings. I'm hoping to use it to show people that having a disability is not a problem.

If I could reach one person, just one person and have them learn that lesson from my writings I will feel as though I have accomplished my goal.

Please visit http://storyofagirl.squarespace.com to read and comment. And please, please pass this on to anyone you can.

Thank you,
~Em

Gratuitous Icon Post! Look above for new icon goodness.

*note to self, it helps if you select the icon when trying to show it off* arse.

Work was good today, I advised two clients and I think it went well.

I've volunteered to take on a non-advice related project for CAB. I was hoping to start tomorrow but I need to talk to someone first and won't be able to until Tuesday so hopefully I can start on weds instead. Basically I'm going to be setting up a database for some of our information and then checking and inputting the information.

I'm excited to do it. it's probably going to get really old really fast tho. I like to have projects that I can set myself a target for what I do that day and then feel good when I meet it.

I have the dates when I finish my full training and become an adviser rather than a trainee adviser... I'm doing a two day course on housing on Jan 17th and Feb 14th.

Coincidentally, I first started my five day certificate course Feb 22nd this year. Obviously I was then "on hold" for a couple of months because I missed a few days due to the plague and had to wait for it to run. I started doing the precourse training on October 25th last year so that'll be something like 16 months it's taken me.

That sounds like a pretty good amount of time to take.

In other news, I had super carer tonight and I honest to god don't think my bathroom has been this clean since I moved in over a year ago.

Unfortunately for her that has just won her the award of being designated "official bathroom cleaning carer".

I need to make myself a new icon tomorrow... purple and sparkly and flashing!

Do you ever wonder why exactly you are friends with certain people? I'm wondering that right now.

My sister doesn't like this particular friend of mine and has repeatedly said she doesn't know why I am friends with her. Usually I say "she's a nice person really" or "she's been a good friend over the years" "she's an old friend" etc. If she asked me today I'd have to say that I really have no clue.

I am so ARGGGGGGGH right now. She's even had me thinking that I hate my cp... I know deep down that the problem isn't my CP but the fact that she is thoughtless. It's heard to know that in my heart tho. Anyway I think I've decided that I need to not speak with her for a week and calm down.

Basically I told her I can't afford to fly out and get a hotel this month. she told me I could go and stay with her and there'd be five steps to get in her flat, the bathroom isn't adapted but I'd manage fine and it would all be great.

Yes when we first met I could handle five steps with help, i probably still could if i absolutely had too although it would be harder than it used to be and I'd prob end up breathless. Plus once to go look at her flat is one thing... repeatedly for four days is different. I can also just about manage the loo in an unadapted bathroom without help. But I could never manage the shower and my friend I'd been staying with also has cp (Milder than mine) and can't help me with the loo or up steps. Her response is her housemate (who doesn't speak english) will help me. Yes I do sometimes let carers who i've not met before shower me or take me to the loo but that's different to a friend of a friend. Also it would be dangerous for someone who I can't communicate with to help me up steps (I frequently find people hold me wrong and throw me off balance if I don't explain to let me hold them ratehr then them holding me)

It was just really really hard last night to try to explain that yes, when we were 11 years old and we first met I could have done it. But I'm not 11 any more, I'm 23 and I live in the real world now. I could have done it and I can't anymore.

Usually I'm fine with that... it;s the choice I took (to use my chair more and allow my condition to deteriorate a little as I can do more from my chair) and was (and still in) the right choice for me. Having to explain to someone who already knew most of this tho sucked so much.

Meh... i'm more bothered by the fact that she made me think i hated my cp than by the fact she made thoughtless, senseless, clueless comments.

I just wrote a really stupid entry in my diaryland journal (generally I cut and paste the entries between here and there so they appear in both places).

Well it wasn't a stupid entry just I wrote some things which might upset people who know me and the idea caused me stress. So I've deleted that entry.

Basically I'm having issues with people today. Three specific people have all made me want to go "HAVE YOU NO SENSE?!" and want to bang my head against a brick wall.

Kat rang tonight and I told her that I can't afford to go out on the 28th-31st as planned. It was hard and she was disappointed. She would like me to fly out in Nov but something tells me it's not going to happen. My new plan was to go January and suits me.

Also, if in the middle of an MSN conversation you say "BRB" and sign out and then I've gone offline when you come back later don't get in a worried stress with me when I do sign in again. Particularly if you have my mobile number and could have jsut texted me, damnit.

Work was pretty good today altho I made silly mistakes... I answered the phone and the client said "My name is... can I speak to so and so" I said to the person he wanted to speaked to "It's Mr A on the phone for you." when he got off the phone he went "Emma it was Mr B." and laughed at my silliness. I don't know where my head is at today

Acessibility Issues + Me may be causing issues/raising awareness again at work but I'm tired so that's a story for tomorrow. xx

I got to sit outside for a couple of hours this afternoon. It was really nice out and god only knows I've got to make the most of those days before it becomes all dark and horrible and urgh again.( Read more... )

Why is it whenever I bump into someone I work with and I'm in a place other than the town we work in they act all surprised that I'm out?!

I suspect it might be that I'm out and in my manual not my leccy or walker like they normally see me. I also suspect that I'm just seeing this as because of my CP when in fact they might just ask everyone "What YOU doing here?" when they bump into someone unexpectedly.

In other news, my dad found what happened to me yesterday funny. I know I said I wasn't too bothered by what happened but damnit don't laugh at my misfortune!

I started my Christmas shopping today. Got four things. I'm actually finding that a bit scary. It's a little bit too grown up and organised for my liking :oP

Did I spell "Damnit" right above? It doesn't look right.

My mouth is beginning to hurt again. Time for painkillers.

And finally, Miss Sophie (aka my not so little sister) came over tonight. We ordered dominos (mmm yummy) and watched a dvd one of my sswimming friends lent me.

I feel like a bitch because the dominos man forgot our drinks and i had him go back to fetch them... or at least he said he would and i didn't stop him.

The DVD was The Pacifier and it was a really funny and touching but slightly predictable disney comedy. I liked it.

On a Friday I go to a swimming group for the disabled, you probably knew that because I’ve talked about it before I’m sure. The session at the pool is a disabled session which is open to the public. Our group goes, a group from a day centre for people with learning disabilities goes and there are a few individuals who go most weeks. It’s a decent size crowd and pretty much everyone reckonises others and we smile and say hi even if we don’t know names.

( Read more... )

I've been very very involved in various disability forums this afternoon/evening.

( And the rest... )