>A Review of 2007 In Survey Form

>

A Review of 2007 In Survey Form

 

1. What did you do in 2007 that you’d never done before?

Got a tattoo. Learned to knit. Helped to run training for new people at work. Saw Daniel Radcliffe naked.

 

2. Did you keep your new years’ resolutions, and will you make more for next year?

I had goals I was working towards – some I met and others I’m still working on.  Still others were unsuccessful.  I will set new goals for next year as I do frequently – reevaluating my life and situation.

 

 

3. Did anyone close to you give birth?

No

 

4. Did anyone close to you die?

Yes, my good friend and “older brother” Stevie died on 12th May (which also happens to be my mum’s birthday.  When I knew he was very ill and may die I lit candles and was simply praying for him.  But all I could pray was “not another death” and also think of this survey and pray that I could have year when I could answer no to this question.

 

5. What countries did you visit?

Ireland and Scotland (in June on my JST trip)

 

6. What would you like to have in 2008 that you lacked in 2007?

If I can I’d like to come off or reduce some of my medication but I refuse to beat myself up if it doesn’t happen.

 

 

7. What date from 2007 will remain etched upon your memory, and why?

21st July – Harry Potter and the Deathly Hallows released

12th May – Stevie died

13th April, got my tat.

 

8. What was your biggest achievement of the year?

The fact that as of this writing I only have to take my medication tomorrow and I won’t have missed a single dose this year.  For the girl who spent most of last year chosing not to take the damn tablets because she “couldn’t be bothered” or had better things to do or it was just too much like hard work that’s pretty damn amazing.

 

 

9. What was your biggest failure?

 Not standing up for myself more.

 

 

10. Did you suffer illness or injury?

I actually think this year was pretty healthy for me; I had three spells of in bed for a few days illnesses and my spasticity levels are currently outrageously ridiculous BUT I only had two course of Abx and I didn’t miss a single dose of medication!

 

11. What was the best thing you bought?

New Matress and New dryer. The Jazzy also ought to have a mention here too.

 

12. Whose behaviour merited celebration?

Too many to mention

 

 

13. Whose behaviour made you appalled and depressed?

Local government services – both in the way they treated me personally and with what I’ve seen through CAB.   Oh and the medical purser on my JST voyage.

 

 

14. Where did most of your money go?

My holiday

 

 

15. What did you get really, really, really excited about?

Going to see KIM!!! We’d lost touch and hadn’t seen each other for three or four years.

 

16. What song will always remind you of 2007?

I really can’t think of one.

 

17. Compared to this time last year, are you:

i. happier or sadder? Happier

ii. thinner or fatter? Thinner

iii. richer or poorer? In real terms, probably poorer but I will say richer

18. What do you wish you’d done more of?

Spending time with people; swimming.

 

19. What do you wish you’d done less of?

Obsessing about things and getting stressed and depressed about them.

 

20. How will you be spending Christmas?

At my parents house

22. Did you fall in love in 2007?

No, love is overrated

23. How many one-night stands?

None

24. What was your favourite TV programme?

Grey’s Anatomy

25. Do you hate anyone now that you didn’t hate this time last year?

I have very different opinions of a few people but I wouldn’t go as far as saying I hate them, it’s too strong of a word.

 

26. What was the best book you read?

I had thought it would be Harry Potter and the Deathly Hallows.  But whilst that was a good book and I did love it.  In some ways it was full of cliches and disappointing.  So, probably Pride and Prejudice.  A close second would be the book I’m reading now but as I’ve yet to finish it, it doesn’t count.

 

27. What was your greatest musical discovery?

Voltaire, probably.

 

28. What did you want and get?

Lots of things – I’ve been making things happen for myself this year.

 

30. What was your favourite film of this year?

I didn’t go to the cinema once so probably Simpsons Movie which we watched on DVD on my birthday.

31. What did you do on your birthday, and how old were you?

Had dinner at my parents house, played a game of Articulate and watched the simpsons movie. We went to see Starlight Express (tix were my birthday present) a few days later. I turned 26!

32. What one thing would have made your year immeasurably more satisfying?

Nothing really.  I know that I couldn’t have undone the thing I hated most and I never can – so I refuse to obsess about it.  Especially because if it was undone I would never have learned certain lessons and wouldn’t even have realised the significance of it.

 

33. How would you describe your personal fashion concept in 2007?

Clothes that don’t fit because they are either too big or too small!

 

34. What kept you sane?

Knitting, Reading

 

35. Which celebrity/public figure did you fancy the most?

Gordon Ramsay (is slightly ashamed of that answer)

 

36. What political issue stirred you the most?

Ashley X/Katie Thorpe/Charlotte Wyatt (although we here very little about her now) – right to life, eugenics and medical treatment with disabilities in short.  As a small side note, this is the 4th year I’ve done this quiz and at least the 3rd when Charlotte Wyatt has been the issue that stirred me most (or part of it)

 

37. Who did you miss?

Stevie. Nanny, Gran and to a lesser extent my two Grandad’s.

38. Who was the best new person you met?

I refuse to name names as I don’t like this question. I know who they are however and it’s someone I met last year but got to know properly and truly call a friend this year.  Or actually there are two people that could be and it’s kind of both.

39. Tell us a valuable life lesson you learned in 2007:

Do or do not, there is no “try”

40. Quote a song lyric that sums up your year:

Well I’m not crazy
I’m just a little unwell
I know right now you can’t tell
But stay a while and maybe then you’ll see a different side of me
I’m not crazy
I’m just a little impaired
I know right now you don’t care
But soon enough you’re gonna think of me and how I used to be

~ Matchbox Twenty – Unwell.  Because it’s where I was and kind of where I still am.  Also because I’m leaving that behind and that deserves to be acknowledged.

Or because things are a lot better and this more accurately sums up where I am now:

You can spend your whole life building something from nothing
One storm can come and blow it all away
Build it anyway
You can chase a dream that seems so out of
reach and you know it might not ever come your way
Dream it anyway

~Anyway, Martina McBride

>You’ve Come A Long Way, Baby…

>Christmas was good.  A lot better than I had anticipated/expected.

My mum said her favourite bit of Christmas was on Christmas Eve late at night when my brother came back from the pub and we all randomly ended up playing drink while you think only without the drinking part…

it’s a word associate type game they played down the pub and you have to drink whilst trying to work out what to say – someone says the name of a celebrity/famous person and then the next person has to say someone whose name begins with the first letter of their surname.  So for example if Ben said Vinnie Jones then I could say Julie Walters and Soph could say William Shakespeare, Mum would say Sarah Ferguson and Dad could say Farah Fawcett.  Add in various rules about double letters and one word names and you have the game.  It was fun.   And surprisingly, more difficult than it seemed it would be.

I ate too much.  I had serious attack of the giggles.  I didn’t drink very much alcohol but what I did have seriously hit me (although that was the same day as the giggles).  I didn’t get so stressed out and out of control that I threw up or felt ill.  I didn’t shout at anyone (beyond repeatedly shouting for mum to come rescue me in the loo when the equipment we set up to help me failed whilst I was using it oh, about three times, or when someone else had moved it).   I didn’t argue or otherwise fight with anyone – no one did.  And I didn’t shed one single tear.

In short it was everything possible it could be, and it was good.

I know this probably doesn’t make sense to anyone else but for me I think the best bit was when I got home late on Wednesday night and thought things through.  It hit me then.  No shouting, no feeling ill and stressed, and not one single crying spell or even a tear.

That’s the first time in about as long as I can remember (at least since 1999) that Christmas has been that “easy” for me.  And I enjoyed it.

At the time I didn’t realise it – because it was unremarkable.  But then I came home thought things through and the realisation became the best part of my Christmas.  I’ve come a long way, baby…

>Thoughts as Christmas Comes

>I loved Christmas when I was little. Really, really loved it. And up until last year I enjoyed it.

Last year… I looked forward to it and sort of enjoyed it. It wasn’t easy being the first year without any Grandparents or our Christmas Traditions which revolved around them and time spent together. It was a little stressful particularly given that I had a lot of big events in the days between Christmas and New Year and so didn’t get a rest particularly as some were emotionally challenging/draining.

This year, I’m tired and I would say pretty close to burn out. I’m enjoying being off and having a rest (I’m still in my PJ’s and have been all day) but I have no real enthusiasm for Christmas. Truthfully, I’ve said to several people that I’ll be glad when it’s over.

Our Christmas Eve/Christmas Day/Boxing Day spent with different relatives and doing different things have ended. We didn’t have them last year and our grief made that hard. I’d thought this year would be easier but I don’t know now that it will be.

What we didn’t know last New Years Eve was that was to be our last with our tradition of getting together with Pat Phil and Stevie. Because Stevie died suddenly and unexpectedly in May. Our grief and the amount we miss him is huge – and for Pat and Phil it’s even worse.

I’m really struggling at the moment with the fact that I wrote nothing here about what we did that night; about the fact that it doesn’t look like I took any photos. I can’t even remember what actually happened beyond it would have involved dancing to music, eating too much watching fireworks in my mums front garden and playing some kind of game – because that’s what we always did. And we all loved it. Especially Stevie.

Probably we piled his plate full of food because “mummy doesn’t feed you” (he was really small and my mum does huge portions of food for all of us whilst Pat argued she’d given him to much – add that together and you had our feeding running joke.) Chances were Pat and Phil argued about whatever game we played. Stevie would dance around the lounge whilst we played as he couldn’t join in and we’d pop in and out between turns or sometimes he’d sit with us and enjoy being part of the group. He’d grin and laugh. We all would.

But unknowingly, last year was our last time. They say blink and you’ll miss it. Well, I was there. But then I blinked and I sure as hell missed it. Missed the chance to savor it and I can’t remember. How that hurts. But then again I don’t think I would have wanted to know it was to be the last time.

I’m spending this New Year’s Eve at my friend Sam’s house. I’m sure it’s gonna be great fun and I’ll enjoy it. But it’ll also be the first time I’ve ever been away from my family on that night… and the first time in as long as I can remember when I’ve not spent it with my adopted as good as “big brother.” And that hurts.
I am going to enjoy this Christmas. That’s the best way to honour Stevie and my Grandparents and everyone else I loved who has gone on to “the next great adventure.” But at the moment it’s an unknown… and that’s hard. All I know is that I’m going to make it count.

Merry Christmas.

I hope that you
can make it
count for you
too.

>Stand up and be counted

>If you live in the UK (or are an expat/overseas with the UK forces) and you or your friends or loved one receive community care via social services (or whatever they call themselves if your area) please go HERE and sign the petition to the Prime Minister to allocate adequate funding and improve the provisions for care nationwide.

[You’ll need to fill out all the details but they won’t be used for anything other than the petition (I’ve used it before) – you will however receive an e-mail with a link which you must click before your name is added to the petition – to prevent spambots.]

It’s time we stopped moaning about how bad things are and stood up to be counted. Sign the petition.

>”they were free, they’re now not”.

>It’s kind of the “done thing” here in the UK to offer discounts to disabled people and carers or sometimes to offer free entry for carers. It’s a way of recognising that things aren’t ever going to be completely fair and level the playing field somewhat. My parents and I will always mention that I’m disabled and need a carer when booking tickets 1) to ensure they can meet my needs and 2) so we can make use of any discounts. My mum also has gone as far as going “I’m her carer, do you give discounts for carers?

I had a feeling I wrote about part of this story back at the end of September when it first happened but I can’t find the entry and there’s been a slight development today so, if i have, forgive me.

I love to go to the theatre. And my mum and I (and occasionally friends or other relatives) go every few months to the one in Oxford. We’re going on Friday along with my friend Elisa and my sister. We’re going to see Starlight Express – the tickets were my birthday present. But despite their being a present I organised and paid for them (mum paid me back).

The theatre had a system whereby the disabled person paid full price (and had to sit in the worst of the most expensive seats) but the carer went free. So given that me and Elisa both use chairs I figured mum and Soph would both be classed as carers.

An important point here being that whilst the theatre is accessible there is no way that the two of us in chairs could go alone. We’re both extremely independant and capable of going without a carer or other able-bodied person but the way the access works (particularly to the loos) is such that it wouldn’t happen. Elisa may surprise me and manage but I will be surprised and there definitely is no way i could. the small matter of the disabled seating being at the top of the theatre and the disabled loo miles away down an extremely steep ramp and then up another steep ramp. And those ramps are not the 1 in 12 that is considered safe for a chair. Mum normally takes me down it backwards and it takes both of us.

So I booked the tickets for Friday and queried the price because I thought it sounded too much. I was told they still offered a discount for carers but it was no longer free; they had a new system. To me it sounded as though the price was full price for all tickets but I was assured the discount had been applied. However when I questioned how it worked (for example, when we went to see Equus in London we had to have the most expensive tickets due to my chair but they charged us for the cheapest) the woman couldn’t tell me.

Off I went to their website. No answer there.

So I clicked on the link for “e-mail the manager.” I got an out of office auto reply saying he’d be back in on October 1st (this was late September).

This is what I wrote:
From: Emma
Sent: 24 September 2007 14:28

To: Manager, New Theatre, Oxford

Subject: Message from Website – facilities for disabled customersHello,

I am a wheelchair user and have frequently attended shows at the New

Theatre in the past. I have always been very impressed by the level of

service and attention I have received from your staff both in person and

over the phone.

This morning I booked tickets for a couple of shows and when I queried

the cost was told that the complimentary ticket for carers has been

stopped. The person I spoke to said that the price I had been quoted

included the discount but didn’t really explain how this is now worked

out. Please could you explain to me why the scheme has been stopped as

I find this very disappointing – theatre tickets are expensive,

particularly when you must pay for a carer (I cannot visit alone) as

well. Also could you explain how the new system works? This would be

useful information for me to have for future reference.

Many Thanks,

Emma Crees

Today, nearly three months later, he saw fit to reply.

Whilst I in no way think I deserve to have complimentary tickets still the issue for me is the fact that I am independant and in no way need a carer to go to almost anything but there set up means I must have one. As well as meaning I must sit in the most expensive seats, sit right at the back (which means if you go to something like Rocky Horror where people stand up and dance for parts you can’t see the stage – they do have cctv screens but the quality is crap and I paid to watch the show not watch it on tv). which arguably are the worse seats in that section (I imagine having been to other theatres there are better seats in the cheaper sections to a certain extent). The set up also means I can’t go down to the stage if they do meet the cast in the interval (which is rare there, actually) and I must be taken to the loo like a child.

I’m not sure if I’m more annoyed with the “put up and shut up” wishy washy not answering my questions nature of his reply or the fact it took him THREE MONTHS to send it for christ sake.

This is the reply:
Ms Crees,

Thank you for your email, please accept my apologies for the delay in

responding.

Yes, I do accept that Live Nation’s new pricing policy for able bodied

companions is an emotive one and I accept that visits are expensive

enough however I have been asked to enforce it. Basically tickets for

able-bodied companions were free, they are now priced and the lowest

ticket price available for the performance the customer is looking to

book for. Should you wish to make a booking then you need to liaise with

our Group Bookings department who also handle calls from customers

wishing to book with carers, please contact XXXXX

Wishing you my best intentions at all times,

Mum suggested that I e-mail him back asking for more information and we both thought I should ask if they plan to improve the access so carers aren’t always needed. But I think I shall find someone else to e-mail (and also ask how long queries are supposed to be answered in). God only knows if I e-mail him again, I’ll probably be waiting until March at least!

Still, I did expect more than “they were free, they’re now not”.

>Hallelujah – Jeff Buckley

>

Well I’ve heard there was a secret chord
That David played, and he pleased the Lord
But you don’t really care for music, do you?
Well, it goes like this, the fourth, the fifth
The minor fall and the major lift
The baffled king composing hallelujah
Hallelujah, hallelujah
Hallelujah, hallelujah

Well your faith was strong, but you needed proof
You saw her bathing on the roof
Her beauty in the moonlight overthrew you
And she tied you to her kitchen chair
And she broke your throne, and she cut your hair
And from your lips you drew the hallelujah
Hallelujah, hallelujah
Hallelujah, hallelujah

Well baby I’ve been here before
I’ve seen this room and I’ve walked this floor, you know,
I used to live alone before I knew you
And I’ve seen your flag on the marble arch
And love is not a victory march
It’s a cold, it’s a broken hallelujah
Hallelujah, hallelujah
Hallelujah, hallelujah

Well there was a time when you let me know
What’s really going on below
But now you never show that to me, do you?
I remember when I moved in you
And the Holy Dove was moving too
And every breath we drew was hallelujah
Hallelujah, hallelujah
Hallelujah, hallelujah

Maybe there is a God above
But all I’ve ever learned from love
Was how to shoot somebody who outdrew you
And it’s not a cry that you hear at night
It’s not somebody who’s seen the light
It’s a cold and it’s a broken hallelujah

Hallelujah, hallelujah
Hallelujah, hallelujah,
Hallelujah, hallelujah
Hallelujah, hallelujah
Hallelujah, hallelujah
Hallelujah, hallelujah
Hallelujah.

This is probably going to be the first of several “songs of my life” entries written this week as I have a couple of other songs I want to put here.  And also it stops me having to write about how I’m feeling mentally/emotionally right now (not good).

I love this song.  I loved the Rufus Wainright version of this song (from Shrek) when I first heard it but then I heard this version a few weeks ago and it moved me even more.  I love it.

Mostly I just love the slow quiet peaceful feel it has.  It’s calming, healing almost.   And with my head a mess of thoughts and emotions, with my demon resurfacing once again, it is welcome.  It soothes me when my soul is troubled as it has been all too often just lately.  I don’t know if it’s the words or even the message – but it’s definitely the melody.  and it’s definitely all those things mixed together to form a whole that is greater than it’s parts.

I’ve never been diagnosed with Seasonal Affective Disorder and I don’t think that I have it to it’s true extent.  But it’s certainly true that I struggle big style at this time of year.  I never noticed it before I went to uni and I used to think it came down to getting used to new carers, new housemates and new classes at this time of the year with the start of a new semester at the beginning of October.  Now however I can’t help thinking that definitely did play a part (because I am struggling more this year than last due to the drastic change in my support situation), the light and the lack of it as well as the cold weather, crisp breezes and icy paths played the biggest part.

It’s tough right now.

But I keep going.  Safe in the knowledge that I have sixteen more doses of medication to take this year – and then I won’t have missed a single dose in 2007.

I am making progress and leaving my demons mostly in my past.  It just doesn’t feel like it all the time.

>My Lords, Ladies, and Gentlemen…

>This here Wheelchair Princess spent the morning at the palace.  Blenheim Palace.

It was fun.  Absolutely fucking freeze your tits off freezing.  And the point in time when I spent 30 minutes having my photo taken without a coat on was bloody stupid of myself.  But it was fun nonetheless.

The palace and it’s surroundings are beautiful, absolutely breathtaking.  We didn’t go inside but we did get to go right up outside it and we got taken past a load of signs indicating that this was a private area.  How much did that rock?!?!

When we got back in the car to drive to the particular part of the grounds they wanted to do our thing I wondered why we didn’t just leave the cars and walk (at that point in time we were in the estate offices right by the gate to the grounds, not on the grounds.  Let’s just say that it soon became more than blindingly obvious just why they chose to drive!

This was the official drawing of a raffle that has been running for about three months (since Oct I think but they said three months so who knows?!).  The Duke of Marlborough who lives at Blenheim Palace is a patron of the Pontoon Project which the raffle was for.  And he donated the top two prizes so we went there for the drawing.

The Duke wasn’t at home this weekend (so unfortunately there is no tale of The Duke and the Wheelchair Princess but there is a chance that this project will lead to a similar but better type tale to be told late next year).  But the two people who have been most involved in the project and I went there and John (the Duke’s top man) did the drawing for us and we had photos taken with him and the palace in the background.

At one point I was sat really close to the palace and nothing was happening and I just turned myself in a full, slow circle taking it all in.  I hope to return in the summer when the Palace is open to the public and it’s possible to tour it.

It was majestic.  Truly it was.  There can be no other words to describe that place.

And how fitting that Winston Churchill was born there and is buried not far from there.

I feel blessed that last night I got a phone call “on the off chance” that I might like to go and represent the sailors.

It was sort of funny on the way home, I kept thanking Bill for taking me, thinking of me, inviting me and he kept thanking me for coming and helping…

What a blessing.

How amazing.

>How important am I?!?!?!

>Guess who just got a phone call asking her to be one of four people invited to represent her sailing group at Blenheim Palace (birth place of the greatest Briton ever, Winston Churchill) tomorrow?

OOOOOOOoooooh it’s exciting!

>bit o this, bit o that

>I’m in a writing mood.  I’m also really tired.  The two together are not really a good mix but what can you do?

I’ve been doing loads of knitting over the last few days… I think my speed has really increased.  but then it’s all garter stitch (think thats the right one, just knit?) and I’m using chunky yarn on 9mm needles.  It’s a just because present for someone for Christmas.  Then I want to use some purple self patterning yarn i have up – have  rough idea for something in stockingette but need to think more.

And I want to knit a thing that i think is called a cowl but I dunno what happened with my circular needles.  And they seem to be a bit of a bugger to get the hang of.

I am a little obssessed with yarn today.

Positive things about this evening:

All of my washing including towels and bedding is washed and dried.  It’s been a long time since I had no laundry on the airer and or waiting to go in the machine.  Buying a new dryer a few weeks ago was a good decision.

And my mum came round this evening and wrapped all of my christmas presents (apart from her own, natch).  That’s a huge stress off of my shoulders.  Usually carers do it but with reduced support I wasn’t sure how we were going to fit it in and it worried me a bit.

Less care has been going well but it is the silly little things like that which worry me and make the biggest difference. The little things are also what differentiates between an “ok” carer and a really great one.  My regular carer is really great.  I keep having another one lately though and for some reason I can’t explain I don’t feel comfortable with her.  Tis strange.  Hopefully if she keeps coming we will get on better (but a big part of me hopes she doesn’t, I must admit!)

I *think* there may be a plan afoot for silliness with me and my sister next week.