>No swimming, blah

>I really need to wash my hair.  I didn’t bother this morning because I was supposed to be going swimming this afternoon and didn’t see the point.

But now… swimming is cancelled (because the pool is too cold?!?!) and I really can’t be bothered to get undressed and take a shower.  Originally I’d hoped to go to another session at the pool today but based on what the second person to call me and tell me it was off said, I think the pool is shut all day.  And I can’t get through on the phone to talk to them at the pool and find out or sure.  At least Mum and I got in the pool on Tuesday night…

So I’m off to find some form of exercise and something else to do today (was really looking forward to a swim…)  If you see me around town looking something like a bit of a skank please take pity on me and ignore that fact!

>Sick and Tired

>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.

>HUGE success.

>I wrote here about the “society hates disability” experiences I had when I went to London three weeks ago.  And one of the things I briefly mentioned was the fact that the people sat behind me in the theatre complained that I/my wheelchair blocked their view.

I wrote a letter of complaint to the theatre about that (along with complaints to Reading and Waterloo stations).  And I received a reply to my complaint this morning*.

They are pleased I found their staff helpful and the theatre accessible.  She comments that they have a nation wide training scheme called “showing you we care” that they use to accomplish this.  I find that name amusing.  And they are also run by the same company (Live Nation) as the theatre in Oxford where the service has never been as good and they appear to have different policies.  So that’s slightly confusing.

She apologised that there were no staff at hand to deal with the problem in a “tactful and discreet manner” and also apologises “profusely” that the people who mouthed off at me didn’t take it up with staff.  She also thanked me for my “calm and sensible approach” to the problem.  Which is acknowledged to be a difficult situation.  That bit makes me laugh because I am so not a calm person and it was hard for me not to tell them to shut up and fuck off.  The presence of kids all around us being the only thing that stopped me.

Finally the letter ended with the comment that they take all comments from customers very seriously and they appreciate the time I took to write.  Also they hope I will return so they can exceed my expectations ;o)

That’s a really great reply and I felt like they took my comments seriously, weren’t just saying things because it was expected.

And also a copy of my letter has been forwarded to Disney Theatrical Productions so they can be aware of the problems I experienced and take it into consideration when considering allocation/provision of seating for wheelchair users or other disabled customers in future.

That’s HUGE.

I’m so pleased.

*Post around here must be seriously improving, the letter was only dated yesterday. 

>Wheeling!

>I’ve been out and about in my manual chair this afternoon.

I noted the time when I left home and when I got back in.  I left home at 14.31 and returned home at 15.16.  I picked a point that by my (very) rough estimate is 150 or 200 metres from my house – uphill on the way there, down on the way back.  In the time I was wheeling I didn’t stop and I did there and back three times.

My hands were black by the time I got in.  And I was gagging for a drink.  Otherwise I think I might still be out there now…

>I run for life

>I signed up to do something that might be a little crazy earlier today.  Most people have asked me “are you crazy?!” or gone “bloody hell” or “is that a good idea” when I’ve told them (apart from one dear friend who went “when is it i might join you”).

I’m going to do the Race for Life in June.  And I’m going to do it in my manual wheelchair.  And I’m not going to be pushed for any of it.  I’m going to do the whole 5K under my own power.

Crazy?  Possibly.  Difficult?  Yes.  Worth it?  Definitely.

>Pizza!

>I made pizza from scratch this afternoon – another one to tick off the 101 in 1001 list.  It was good messy fun but not as messy as I thought it would be!

I couldn’t eat it though because the dough didn’t cook properly 🙁  but the couple of bites I had before I realised that were nice.  Might try that again some when.  But probably not any time soon!

>Better left to chance

>I’ve written before about how I believe that having CP is what is right for me.  And about how if I didn’t have CP there are many experiences that would have been different.  Some good; some bad.

There are things which CP means I do differently to everyone else – a friend’s dad once told her in my hearing that she should be grateful because there’s plenty she does I can’t (she has a milder form of CP).  I told him I do everything everyone else does but I just do it differently.  I don’t think he got it.  He made out that he did but he was humouring me.  i don’t think many people get it.

My life would be different if I didn’t have CP; very different.  I can’t tell you what that would be.  It has never happened and it will never happen.  But what I can tell you is that it wouldn’t be any easier.  Life isn’t easy.  It’s not supposed to be.

“The soul would have no rainbow if the eyes had no tears”

That’s an American Indian proverb and is very, very true in my opinion.

I was listening to my iPod this morning as I wandered on my way up to the bureau.  I shuffled it before leaving the house and one of the first songs that came on was Especially for You by Kylie and Jason.

That used to be one of my absolute favourite songs when I was  a little girl.  And listening to it brought back a memory which I think was about three weeks before my 8th birthday.  It wasn’t a happy memory.  At the beginning of December that year I was hospitalised and I had my last surgery (hamstring and ankle releases).  I was on the childrens ward and one day someone from hospital radio came to see me.  They asked me to chose a song which they would play and dedicate to me.  I asked for something by Kylie or Jason.

Fast forward to that evening or maybe the evening and I had to have an injection.  They had to hold me down to do it and I screamed and screamed.  At the same time someone took the headphones to the hospital radio and put them on me.  Especially for You was playing – especially for me.  I listened to it as I screamed and I cried.

And as I listened to that song this morning I remembered that long ago day.  And yes, I could have done without that experience, without that memory coming back to me.

18 (argh! 18?!?!) years later it can safely be said that long term that surgery probably didn’t have the success we wanted from it.  Sometimes now I look back (even over the last four or so years) and wonder just how the hell I used to be able to do things that I can’t any more.  Because things have changed so much.  Maybe without that operation (or any of the others) things would be better than they are now but equally they may be worse.  I really don’t care either way.

As with several other experiences I have had, I’ve been there and I’ve done that (hell I even bought the t’shirt!).  And if I had of known what the outcome would be I might have chosen differently.  But I’m glad I didn’t know.  Because each experience brought me blessings and good things – things that if I’d missed out on the pain I’d have missed out on.

I love who I am now.  Even if it did take pain, suffering and something of an ongoing fight to get here.

One of my favourite songs is The Dance by Garth Brooks

And now,
I’m glad I didn’t know
The way It all would end
The way It all would go
Our lives,
Are better left to chance
I could have missed the pain,
But I’da had to miss the dance.

 

The dance makes it all worthwhile.

>”February is fabulous”

>A long time ago, on a Tuesday in February, I was diagnosed with depression.  And one week later on another Tuesday I received a phone call.

I was excited when I saw who was calling on the screen of my mobile.  But I should have known it wasn’t a good thing – because we were great friends but she never called me – it was always text and e-mail with the very odd letter.   Never in a million years did I expect what came next.  She had died the day before.

This year marks five years since the day I received that diagnosis. the day a week later when I received that phone call is five years ago tomorrow.  She died five years ago today.  I don’t know how it can have been five years.  It feels like yesterday.
Thursday marks eight years since her older sister and another good friend of mine died.  I don’t know how it can have been eight years.  It feels like yesterday.

And 11 days ago was the first birthday of Stevie’s since he left us.  In three months it will be a year – but it still definitely feels like the rainy day I sat watching candles burn and watching the rain poor down the window in my back door was yesterday.

February isn’t a great month for me, I really don’t like it.   But this year I’m working on the premise that “February is fabulous”.  And I’m remembering my friends by having fun and doing things and simply by LIVING.

I can’t say I haven’t had bad minutes/hours/days.  Because I have.  But it has made it easier.

I got told something today that would usually send me spinning and upset me.  Today I was just really amused – and I also thought it was really pathetic.  I think maybe this attitude is making me a bit of a bitch.  But it works for me.

I’m enjoying February more than I have in the longest time.

>Right but not easy.

>I  am currently TRYING to spend less time online and/or in my wheelchair.  It is and it isn’t going well.  Yesterday would be an example of it not going well – the time tracker thingy i have in firefox shows I was actively using it for over four hours.  If I’d gotten some of my to do list ticked off that would be a good thing but…

I have the majority of my MSN contact list blocked and haven’t been on a couple of favourite sites/message boards.  Those two things being my online time suck extraordinary

I finished one book Friday night and have nearly finished (have about 70 pages left) my third book since then.  That would be an example of things going well.

I don;t know, it’s a good idea and it’s healthier for me not to spend so much time online or in my wheelchair.  And I did manage to loosen things up in my legs really easily yesterday when I was persistant about the standing thing.  But overall it’s not an easy thing to do.   It’s right, but it’s not easy.

>”Hi Emma”

>I met John Barrowman tonight!!!!!! He was signing copies of his autobiography in Borders and I met him!! Had to queue for about an hour and a quarter but well worth it*

He’s still very yummy in person but he looks different to how he does on TV.

He thanked me for coming and asked if I’d read any of the book yet . I said no but that I was going to. And a member of staff introduced me to him “This is Emma”. The best part was when he said “Hi Emma”

I also met his sister, who co-wrote the book. She told me that she did most of the work so I got to get her signature as well. I can’t remember what i said to that.

Hopefully I should have some photos to share soon.

*I was, however, sat in the queue thinking “God I love being in a wheelchair” because the way it was set up meant i kinda accidentally skipped half of it.  S’not my fault they set things up to queue from the escalator and I used the lift and couldn’t work out where it began, is it?!