>St Patricks Day!

>Here’s to you and yours, and to mine and ours.
And if mine and ours ever come across to you and yours,
I hope you and yours will do as much for mine and ours,
As mine and ours have done for you and yours!
~Irish Toast

St Patricks’ Day isn’t something that is too much of a big deal to me – it’s just another day.

But I’ve been thinking today about one of the St Patrick Day’s when I was at uni, Michelle and I went and sat outside the LRV and had a drink on St Patricks Day. (so this would have been two or three years ago). It was warm. it was nice and it was fun.

I used to love sitting in a huge crowd of people on the tarmac outside the union watching everyone walk between lectures and around to the halls and just seeing the world go by! I really think it was the little things like that which added up to the huge whole that made my university experiences so great rather than the big experiences – although they rocked too.
A big difference from today when it’s bitterly cold and I just wanted to stay in the house! For some reason I’m finding the difference/contrast quite astounding today although I probably shouldn’t be.
I loved my time in Stoke at uni and I miss it. I’ve been missing it more and more the last few days but I wouldn’t want to go back.

I am however very grateful for the good times I had their and the happy memories I have of my time there!

>Another One Bites The Dust

>(cross posted to http://www.pounds2go.net )

Another one bites the dust
Another one bites the dust
And another one gone, and another one gone
Another one bites the dust
Hey, I’m gonna get you too
Another one bites the dust

My scales show I’m down another pound this morning which I am more than happy to take! I’ve been in a pit of depression all week so I wasn’t expecting to lose anything. It was a nice surprise to see that this morning.
I’m just trying to believe that its actual real weight loss and not because I had my hair cut from shoulder length to chin length yesterday morning!

Emma ~ 15 lb lost, 35 pounds2go!

>Thursday Thirteen

>

Thursday Thirteen

Thirteen Things about Emma

1…. I am a volunteer adviser for citizen’s advice bureau
2…I am intending to get all my hair cut off today
3…I have lost one stone since 23/01/06
4… I like random silly music… I’m listening to the sesame street theme as I write this
5… I am the worlds biggest procrastinator
6… I am easily annoyed
7… I have been very depressed all this week
8… I need to be on a train in 40 minutes so I shouldn’t be on this computer!
9… I worry about my family a lot.
10… I had a dream on Tuesday about a friend of mine who died three years ago. I liked seeing her in my dream but wished it was real.
11… I don’t think I’ve taken my antidepressant since Sunday (hmm see the link with number 7??)
12… I like to shatter assumptions
13… I am addicted to chocolate chip cake bars (diet, what diet?)

Links to other Thursday Thirteens!
1. Mama B

2. Shelli

Get the Thursday Thirteen code here!

The purpose of the meme is to get to know everyone who participates a little bit better every Thursday. Visiting fellow Thirteeners is encouraged! If you participate, leave the link to your Thirteen in others comments. It’s easy, and fun! Be sure to update your Thirteen with links that are left for you, as well! I will link to everyone who participates and leaves a link to their 13 things. Trackbacks, pings, comment links accepted!

>One Voice

>“One voice can be stronger than a thousand voices.”Captain Kathryn Janeway to Seven of Nine. (from the Star Trek: Voyager episode The Gift)

One voice can be stronger than a thousand voices and that can be a very wonderful thing. People with strong voices have changed the world and shaped our history. And others with voices equally as strong have changed it in small ways too, influenced one person in a small way and shaped their life, made a difference to them.

One voice can also be damaging. It’s something I’ve come to learn through my time as a CAB adviser. People, all people not just people in the public eye, need to be aware of what they are saying. More than that however, they need to be aware of how they are saying it. That’s something which has been brought to my attention time and again over the last week or so.

People have made comments to me or asked questions which could be interpreted as hurtful or in some cases were not deliberately meant to be hurtful but have the potential to cause harm. I am able to realise the truth and the real situation in most of these cases and so I am not affected. But then I am because I know of many people through my various different achievements and experiences who wouldn’t see those words for what they were and would be harmed by it.

This happened on Friday, twice on Saturday and also yesterday. Perhaps I am reading too much into some of these situations, I don’t have the distance from them to be able to judge.

I’ll leave what happened on Friday because it’s not really relevant to this entry. On Saturday I went to the hygenist. [background: I am seen by the hygenist in a different consulting room to her usual one due to access issues, the receptionist vaguely knows my parents] The receptionist was getting the room sorted out and moving my wheelchair away from the dentists chair after I transferred. She was chattering to me when all of a sudden she comes out with

“So will you ever get better Emma?”

I explained what CP is and that it’s a from birth to death type thing.***

She went “Awwwww”

I said it’s fine and how can I miss something I’ve never had? Which for the most part is true.

I have no problem with discussing my disability, I believe it’s a really positive thing to do. And as my Dad commented it’s a fair thing to wonder. But it would have been a nicer question if it had been phrased as “so what’s your disability?” or if she knew I had CP “What does CP mean for you?”

Being asked if I would get better annoyed me because I found it rude… but I know people who it would have really upset or devastated – to her it was an innoculous question but to others it could have been a real issue.

My social worker yesterday made a few “suggestions” as to my care and the way I use my direct payment to organise it. One of which was that I should stop using my agency as it’s almost a waste of money. I can (she says) get my sister to do my care (or at least the part that is about to be set up as new). I explained that my 17 year old sister who is in sixth form, learning to drive, working part time and going to university in September doesn’t have time to do it. She then asked whether Sophie ever comes to see me and said “well when she comes she can do your care rather than whatever it is you usually do.” and also made the comment that if I am worried about the tax/employers responsibilities that come with using DP to fund a private carer I can just not pay my sister.

Yes once again she proved that she doesn’t live in the real world. So I just got really annoyed but kept it to myself, thought she was a silly woman and then vented in this journal when she left .

It’s like Soph said when she heard that though – to some people what a social worker says is gospel and there is no way that idea would work in practice. Again, I know people who don’t know their rights like I do and would just go along with the suggestion regardless of it’s practicality. So she should listen to what is said because it could end up with this huge situation which blows up in her face.

The power of one voice alone is a wonderful thing… but it’s a power we need to be careful with. One voice can do great stuff, but it can also do terrible stuff. No matter who we are.

***Bonus points go to my carer who when I told her about that conversation went “Well, I’m just waiting for my leg transplant… i’ve been waiting for quite a while so it should happen soon and then I’ll be _all_ better” in the most wonderfully sarcastic way and made me laugh so hard

>Braids!

>So my sister did my hair for me this afternoon and then took a pic for me so I could post it here. She commented that it made me look as though my hair was a load of rat tails.

Blue Braids!

Is she right? (click to view larger)

>Defensive or Depressed?

>I am in a really defensive mood this morning and not a particularly happy one at that.  Once again I am feeling as though no one really understands what it is I go through and what I can cope with (and what I can’t).  It’s not a particularly nice feeling.

Then I think I’m not really being defensive, it’s my depression thats making me think/feel/act like this.

But then a part of me recognises that I did bring a lot of this onto myself however inadvertantly.

And then another part of me considers that maybe all of this is just an excuse and it’s not related to my depression at all but just to who I am.

Finally the final part of me thinks “fuck this” and I’m off to eat some lunch.  I’m going to listen to that part of me.

>Sorted out at last

>

So yesterday I came up with the bright idea of playing around with the layout on here.

Two problems with that:

  1. It’s done in CSS. What appears to be very complicated CSS.
  2. I know no CSS whatsoever.

So yeah it can safely be said that was not one of my best ideas ever. And I managed to mess things up so badly that the only way I could fix it was to uninstall wordpress and reinstall it.

Thankfully, powweb.com, my webhost had backed up my data up until yesterday morning and so I downloaded that before I wiped the database and I have all of my content other than yesterdays picture entry up again Albeit in a very managled horribly unformatted way. And in the process I managed to sort my layout out so it was how I wanted. So that’s a bonus too!
Sometimes I wish life’s messes were as easily sorted with undo and redo buttons as this was! Although it didn’t feel particularly easily sorted at the time…

>All the posts so far

>Thankfully it appears I had all of the posts up until the one I posted yesterday saved on my computer and so they appear here as one huge post. Please excuse the screwy formatting. Will fix it if I can!

***

‘This page is still a work in progress! C ‘mon in and make yourselves at home and please promise not to laugh too hard at my mistakes as I try to finish setting up my little web house here!

A proper update is planned for around 24 hours time.’

***

‘I ‘ve decided that I like this set up for journalling. It seems to me that in terms of formatting the posts it will be easier than diaryland. But, I will always hold a special place in my heart for diaryland because that is where I mostly journalled for over five years.

This website is also going to replace my caringbridge journal, it will allow me to have more control over it than caringbridge would. That is something that had concerned me greatly over the last few weeks. CB is a great place and again it remains special to me and I will still be over there checking on my friends… but it ‘s not a place I want to continue writing at.

I ‘ve nothing against either diaryland or CB, I just want more than either of those platforms can allow me and so here I am. Of course, the fact that I can now tell people that my blog can be found at www.wheelchairprincess.com/blog/ is just an added bonus!

This site will be updated most days as before. However I have decided that for the most part I am going to move away from the “daily drivel ” type posts of my previous blogs and concentrate more on what I ‘m thinking/feeling/experiencing and work on improving my writing.

My absolute dream in life is to be a serious writer To do that I have to take my blogging seriously too.

And that starts… NOW

***

Right Now –
-somebody is very proud of you. -somebody is thinking of you. -somebody is caring about you. -somebody misses you -somebody wants to talk to you. -somebody wants to be with you. -somebody hopes you aren ‘t in trouble. -somebody is thankful for the support you have provided. -somebody wants to hold your hand. -somebody hopes everything turns out all right. -somebody wants you to be happy. -somebody wants you to find him/her. -somebody is celebrating your successes. -somebody wants to give you a gift. -somebody thinks that you ARE a gift. -somebody loves you. -somebody admires your strength. -somebody is thinking of you and smiling. -somebody wants to be your shoulder to cry on. SOMEBODY NEEDS YOU TO SEND THIS TO THEM Never take away anyone ‘s hope. That may be all they have. That ‘s something that I was sent a long time ago by someone I once called a dear friend. She is no longer in my life but I remember her fondly and am thankful that she sent it to me at a time when I needed to read it. It also reminds me of the saying “To the world you may be just one person, but to one person you may be the world ” I ‘ve been reading for most of the day. I started this book just after nine this morning and found it to be one of the most amazing and inspirational books that I ‘ve ever read. I barely put it down until I finished it a few minutes ago. It brought to mind both of the above quotes/sayings and so I wanted to share them here. r nJane Tomlinson is someone who was told she wasn ‘t going to have the luxury of time. After being told in 2000 that her cancer had metastised and was now terminal, she was given months to live. At most, she and her husband Mike were told, she had two years. The book I read today is The Luxury of Time. Jane ‘s story as told by her and Mike. Jane is still alive today and since being told she was dying she has taken part in several London marathons, biked from Rome to her home in Leeds with her brother and taken part in the New York Marathon. With her family she has raised over £1 million for Cancer Research and is working on the second million. Her book and her story are unbelievable. I learnt a lot from it and it really made me think. I could go on and on about how great it is and how inspirational and amazing the Tomlinson ‘s story is. But I couldn ‘t do it justice. If you get the chance, read this book. You can buy it here‘,

***

Short (8 second) video of my parents dog Milo. I was just trying out some of the features of my new camera and also some of the features of this!’,’Milo playing with the dust’,0,”,’attachment’,’open’,’open’,”,’milo-playing-with-the-dust’,”,”,’2006-03-05 23:31:38′,’2006-03-05 23:31:38′,”,9,’http://wheelchairprincess.com/blog/wp-content/uploads/2006/03/Grans House 003.mpg’,0,”,’video/mpeg’,0),(9,1,’2006-03-05 23:31:58′,’2006-03-05 23:31:58′,’I just got a new digital camera yesterday and it does video with sound! So… a short video I took of my parents dog today when we were at my Gran ‘s house. That ‘s the TV you can hear in the background. Click here to view

***

I ‘ve been thinking lately about how hard it can be for people to see beyond the parts of you that are on display to the world and to actually see who you are. The obvious exception being blogs where people can see just as much as you let them. A few times lately I have seen photos of people I know so well from the internet and then thought “that isn ‘t anything like I expected you to look like. ” So I thought I ‘d post this picture of me. My sister took it yesterday when I went to their house for lunch. If you look at me you might assume that I am one of hundreds of things, maybe because I am in a wheelchair, or because I wear glasses or because I have blue hair or for any one of many reasons I can ‘t think of. You ‘d be wrong. I am a wheelchair user, I do wear glasses and at the moment I have blue hair. I ‘m a lot more than that though and I have struggled a lot throughout my life to get people to see that. Truly unless you know me well (or really understand disability) anything other than the first one on that list is hard for people to see. At least, that ‘s what it appears to be to me. I am beginning to realise that whilst complete strangers do sometimes see the wheelchair and not the girl in it, a lot of people have taken the time to get to know who I really am but I haven ‘t realised it. I automatically just assume that everything that happens to me or get said to me is to a greater or lesser extent because of my CP. It ‘s time I stopped doing that and accepted that there are some very good people out there – people who have and who will take the time to get to know Emma and not “that girl in the wheelchair “‘,’

***

I seem to spend a lot of my time thinking and dreaming about what I would like to do in my future. I also constantly have a huge to-do list. My to-do list is a lot shorter after the last two days but not empty; I doubt I will ever reach the end of it given how busy my life is. I like having a busy life. Sometimes however I wish I were busier as I have noticed that I am less likely to feel depressed when I am kept busy. And so today I spent some time looking into other volunteering opportunities. There ‘s not anything out there for me today but there will be soon, I can tell. I feel it is my calling in life to make a difference to the way disabled people are viewed and I know I can do that… simply by living my life. One of the people I volunteer with at CAB once told me that he really admired me because it would be so easy for me to sit at home and do nothing, that I didn ‘t have to do what I do but instead I am there helping people. My first thought was you don ‘t know me that well at all Then he went on “knowing you Emma you ‘d go mad and end up on prozac if you did that ” I laughed and pointed out to him that I am already on the generic of prozac, fluoxetine. Then I thought about what he had said and I realised that he does know me afterall. But a part of me still wished that he would admire me for being an adviser, not for being an adviser despite having CP. Because I ‘m just living my life and CP is just a small, small part of it, albeit a very significant one. And in living my life, I hope that someone out there sees that disabled people are people not their disabilities and that having a disability is not the end of the world. Obviously I have been disabled from birth and my condition is not degenerative meaning my perspective is likely to be vastly different from someone in either or both of those circumstances. However I hope that seeing me and hearing my story helps someone, somehow.’

***

Weighed myself this morning and I ‘ve lost 1 stone since 23rd Jan!!! Yay yay yay yay yay yay YAY!! *is most incredibly happy* So that ‘s 14lb down, 36 ish to go.

r nOh and on Wednesday I pulled an old pair of jeans out of the cupboard that I ‘ve not fitted into for about 14 or 16 months and I wore them. And I wore them again on thursday.

r nI ‘ve been on a bit of a journey with those red jeans… I bought them just after I started losing weight the first time, in 2003. I thought they wouldn ‘t fit but they did. Then I lost more weight and I had to buy a belt to wear with them or else they fell off… then i lost more weight and even with the belt they had to go. At that stage the only way you could say I was wearing them would be if you considered permanently falling down to around my ankles to be “wearing them “.

r nMonths past and I gained weight, out came the jeans once more. As more time past the weight continued to pile on and those favourite red jeans were relegated back to the cupboard, to the clothes I can ‘t wear pile. But this time it was because they were too small.

r nAnd then we reach today, my brown cord type jeans I bought in January have been retired as too big and I ‘m wearing my comfy old red jeans, a thought that makes me happy. Hopefully in a few months these jeans will once again be retired. But this time, it will be for the last time. And it will be because I ‘ve lost weight and once again they swamp me.

r n

****

r n

A few links.

r n

An FAQ I wrote about my medical stuff. I did it as a page which means its permanently linked on the side bar but didn ‘t show up on the main page. I ‘d love to know what you think! I have three other page posts linked there at the moment and I have two or three more planned so check them out and keep an eye on it.

r n

One of the many things you didn ‘t know you wanted to know about until you clicked a random link on the internet and ended up on it ‘s webpage can be found here.

r n

Dumb.com Songs these crack me up especially “double diet ” and “it could happen to u2 “

r n

My sister ‘s blog that entry has a picture of her in it too… she won ‘t let me post one of her on here so I shall send you to her place on the ‘net. I have a picture of her in the same dress as the desktop on my phone and my friend Neil saw it today. He took one look and went “she looks like you. I ‘d do her. ” and then informed me that the best thing I could do to keep losing weight would be to go to bed with someone for an hour and do all the work – i ‘d soon burn off the post swimming chocolate bar I was eating. Such a charming guy – gotta feel sorry for his wife!

***

>ARGH back again

>

I managed to destroy this blog and so I uninstalled it and reinstalled it. I have *some* of it’s previous content saved on my computer and I’ll get it back up as soon as I can but unfortunately some of it is just lost to the abyss.

Tis all my own fault, I should really know better than to try to mess with systems that I don’t understand!