>You know you’ve got CP when…

>…getting a date for a hospital appointment through is a very good thing!

Yes, after a three month wait I am going to Outpatients to see the Neuro Physio next week.  As much as my spasticity levels have dropped since switching from Fluoxetine to Sertraline I still need them sorting out as they aren’t good, still.  I’m quite looking forward to seeing the physio and hearing what they have to say.  I just hope it isn’t disappointing!

>Diet Starts Tomorrow!

>Literally this time.  I’m getting serious about my weight loss again and it all starts tomorrow.  Having tried a few weeks ago, lost 6lb in the first two weeks then regained 4 of those in the third and then gone off track majorly I’m making some commitments to myself and I’m blogging them here:

Until 1st August at the earliest I will

do some form of exercise everyday
Drink a litre and a half of water a day
take my meds and supplements daily (Meds I’ve had down for well over a year, supplements not quite)

And I won’t have
chocolate
coke
pizza (with the planned exception of a trip out with friends which if it comes off will involve lunch at Pizza Hut)
anything from the chip shop
sausage and bacon baguettes from my grabbed from my favourite sandwich shop on my way home (or from anywhere else)

In order to help myself stay on track, I’m going to keep a journal of everything I eat and drink and what exercise I do.  And in order to stay extra accountable I’m going to blog it.  But so as not to annoy everyone who reads here I’ve set up a new blog:  Emma Eating

>101 in 1001 – Item 26…

>

Read 250 new to me books

…has been completed!

Finished that one sat in the garden in the sun this afternoon.  And I still have just over 2 months left until day 1001.  At the beginning of this year I was worrying that I wouldn’t be able to hit that goal by 12th September this day (day 1001) but I have and I’ve done so early.  Result.

Of course, it probably helps that I’ve read 57 books so far this year and none of them were re-reads.  I’ve been hankering to do a Harry Potter re-read though so I’ll probably start that soon.  Or maybe not.  I’ve loads of unread books at the moment, it’s totally out of control.

If I’ve done my maths right, I’ve actually read 269 books since the challenge started – 250 new books and 19 re-reads or partial re-reads.

Want to know more about the the 101 in 1001 project? (sometimes referred to as Project 101).  Click here.

Want to see my current 101 in 1001 list? (this is my second list and I’m already sort of planning my third) Click here

>Writing is my passion

>I’m writing again.  Regularly and in decent amounts when I do write.  It’s only been this week but I’ve written everyday so I’m sure that counts as regular.  And today I’ve done absolutely loads.

I’ve been wanting to write I really have.  But with the way my depression crashed in and hit me I was fine if I had to leave the house and go somewhere for a set time, that I could do.  If it was something I had to do in my house like stick some clothes in to wash and something I needed to do but not at a set time that was a huge struggle.  And sadly, my lack of motivation extended even as far as writing.
But, on Monday I put fingers to keyboard once again and started typing.  Slowly but within minutes I was wondering why I’d put it off for so long.  I enjoyed it.  And it was easy and flowing and rewarding just like it used to be.  My depression induced writers block melted away like an ice cube on a hot sunny day.
Writing really is one of my passions and I hate it when that’s taken away from me – for whatever reason.  I’m very happy that I’ve got my meds sorted out and four weeks later they are working well.  I’m finding myself again.  I’m rediscovering my passions.  And most of all I’m writing and working towards my dream of one day being good enough to have a book published.
It’s a very good feeling, especially after so many bleak and dark weeks.

>Disaster Strikes!

>I love my Kindle.  Absolutely love it.  But then I’m a huge bookworm and a bit of a techy gadget loving girl so it was an obvious step for me.  I still absolutely love real books as well and by them often but I use my Kindle a lot.

Yesterday I sat outside for just under an hour.  I started reading a new book on it.  To My Best Friends by Sam Baker.  Based on it’s subject matter (it’s fiction and is the story of the friends left behind after one of them dies having made certain bequests to the others) I’d been worried it would be a little sad so hadn’t started it before bed the day before when I’d been feeling depressed.  Having read and enjoyed another of Sam Baker’s books (The Stepmother’s Support Group) I should have realised it wouldn’t be – it’s not sad or depressing at all.  It’s really good and I got into it and enjoyed it sat there in the sun. Eventually I had to go in and have some dinner and get on with my evening.

Just before bed I picked up my Kindle and thought I’d read a bit more before going to sleep.  I was quite looking forward to it – I’d put it down earlier out of necessity and wouldn’t have done so if I could have avoided it.  This was going to be an enjoyable read to wind down before sleep.

Disaster struck.

I dropped my Kindle.

Heart in my mouth I wheeled over and carefully picked it up.  With a very tight grip on it I checked it over slowly and thoroughly.

Nothing had come off

Nothing had come loose

It had no visible damage

The screen saver was still showing Emily Dickinson just as it had when I’d come in from the garden earlier.

Huge sigh of relief.  Things were going to be OK.  It was absolutely perfect, you’d never even know I’d dropped it.  Wheeled back over to my comfy spot full of resolutions to be more careful next time.  Settled myself down, the adrenaline of disaster averted dying down as thoughts of reading occupied my mind once more.  All was well and happy once again I slid and released the on switch as I’d done thousands of times before.

Only.

It wouldn’t turn on.

Panic set in and the thoughts of going to bed, let alone reading before bed, disappeared.

I’d broken my much loved Kindle – which was very expensive and my treat, a combination of the saving up I’d done for it and for achieving a long held goal which had meant I’d been able to buy it sooner than I would otherwise have been able to.  And this was accidental damage.  Which warranties don’t cover.

Googled the problem.  Forcing a reset by holding the power switch for half a minute before releasing didn’t work.  I tried it repeatedly though, hoping each time.  Pushed all the casing together more just in case it had come loose and I’d not noticed.  No luck.  Put it on charge for a bit even though the battery had been pretty well charged.  Still nothing.

Tweeted my woeful tale of disaster and a broken Kindle.

Lots of tweets in response.  Supportive, but mostly of the “thank God it’s yours and not mine” variety although no one actually came out and said that.  One tale of how they’d broken their Kindle and had it replaced for free.

Left it over night having had a very late one as a result.

Tried to force a restart again repeatedly but it still wasn’t working.  Called the Kindle helpline listing to very jaunty hold music.  She got me to try various things.  I’d tried all but one.  In the end she got me to plug it into the USB on my computer and leave it for an hour when she’d call back.

At that point I’d realised that when I’d said “I dropped it no more than a metre” (she asked)  the assistant had replied “is that about a foot and a half?” and without thinking I’d said yes.  I was distracted, that’s my excuse… I do know that a meter is more like 3 foot!

Phone goes, Amazon calling back.  After talking me through various things to try the assistant transfers me to the “specialist team”.

My heart sank.  This was going to be very expensive.  And I’m broke at the moment.

The first thing the specialist said?

“your Kindle will have to be replaced.”

oh shit I thought

“Which we’ll do for free.”

“sorry, how much will that cost?”

“it’s free.”

“thank you very much.”

Relieved.  this was working out ok after all.

“You’ll need to return the broken one.”

“Yeah I can do that.”

“Just confirm your e-mail address for me, we’ll get DHL to come out to collect it and I’ll need to send you details”

“how much will that cost?”

“it’s also free.”

Seriously so relieved.  I must have thanked her about six times in total.  I bet she hears that a lot though!  I wouldn’t have expected that to be covered in full – no one covers accidental damage in full on their warranty.

I had an e-mail about an hour ago.  My new Kindle has shipped.  It’ll be here Saturday.

I’ve ordered a silicon skin for it.

And my tale of woe and disaster had a happy ending after all.

Seriously impressed with Amazon’s customer service – that’s going above and beyond!

>Books With Disabled Characters (Part 1) #disability #amreading #books

>Back last year I posted some thoughts on books with disabled characters.  Ever since then I’ve been working on and off on a list of such books.  As that post still regularly receives a lot of hits I figured it was probably about time I shared my list.  I’ve split in into three parts as it’s 60 books long.  This is in no way a complete list I just had to find a stopping point and stop hunting.  I’d love to hear any more recommendations you have.  I read a lot but I’ve in no way read all of these books (in fact this section of the list appears to be the one with the fewest books I’ve read) so I’m not necessarily recommending them and some don’t have the best portrayal of disability.  The list is in no particularly order.

1. What Katy Did by Susan Cooleridge
2. Carol Lane series by Mary May
3. The Secret Garden by Frances Hodgson Burnett
4. Deenie by Judy Blume
5. Handle With Care by Jodi Picoult
6. A Trip To The Stars by Nicholas Christopher
7. Gridlock by Ben Elton
8. The Speed of The Dark by Elizabeth Moon
9. A Different Life by Lois Keith
10. Tuppence to Cross The Mersey Trilogy by Helen Forrester
11. The Girls by Lori Lansens
12. Wild Life by Molly Gloss
13. Kerlew in Reindeer People by Megan Lindholm
14. Wolf’s Brother by Megan Lindholm
15. Thick in the Tawny Man trilogy by Robin Hobb
16. The Diving Bell and The Butterfly
17. Little Women by Louisa May Alcott
18. Skallagrigg by William Horwood
19. The Losers by David Eddings
20. Palomino by Danielle Steel

I’ve read: What Katy Did, the first two Carol Lane books, The Secret Garden, Deenie, Handle with Care, Gridlock, Little Women and Palomino.  I also read a couple of chapters of The Diving Bell and The Butterfly in a bookshop but it didn’t grab me so I didn’t buy it and thus haven’t finished it.

Palomino is a typical Danielle Steel but I really loved it when I first got it and read it multiple times.  It’s on my bookshelf and I can’t bring myself to get rid of it although I’ve not read it for years.  One day I’ll read it again. In the meantime I have fond memories of the strength it portrays and the happiness it brought me.

The Secret Garden is another book I have read multiple times although arguable Colin is a very negative disabled character and stereotypically pitied.  Probably at least part of that reflects the time in which it was written.  That’s never put me off though.

I hadn’t even considered that Little Women has a disabled character (Beth) until someone pointed it out to me.  And I loved Deenie as a child (because I too grew up “different”) but had completely forgotten about it until it was mentioned.  It was one of those “how could I forget about that?!” moments.  That’s something I’ve found interesting about these discussions I’ve been having and searches I’ve been doing – remembering books I’d forgotten.  The Making Out Series by Katherine Applegate is mentioned later in the list.  It’s over 25 books long and features a blind main character who loves to use his blindness to throw people off and make them see who he really is – a bit like I do with my own disability.  I’d read all of those books as a teenager, avidly awaiting the next one.  When that came up on an amazon search earlier it was another “I can’t believe I overlooked those” moment.

>Books With Disabled Characters (Part 2) #disability #amreading #books

>Part two of my books with disabled characters list. I’ve not read some  of the ones on this section so not a definitive recommendation.

21. Accidents of Nature by Harriet McBride Johnson
22. The Time Traveller’s Wife by Audrey Niffeneger
23. The Curious Incident of the Dog in the Night Time by Mark Haddon
24. Pollyanna
25. Heidi
26. Easter Island by Jennifer Vanderbes
27. The Memory Keeper’s Daughter by Kim Edwards
28. Veteran by Gavin Smith
29. Oryx and Crake by Margaret Attwood
30. With The Light (manga)
31. Jimmy by Robert Whitlow
32. Icy Sparks by Gwyn Hyman Rubio
33. The Stolen Child by Keith Donohue
34. Harry Potter series by JK Rowling
35. Lady Chatterley’s Lover
36. The State of Me by Nasim Marie Jafry
37. Black Sea Twilight
38. Jimmy First series by Ian O’Neill
39. A Thread of Grace by Mary Doria Russell
40. Lottery by Patricia Wood

I’ve read: The Time Traveller’s Wife, The Memory Keeper’s Daughter, Veteran, Harry Potter Series, Lady Chatterley’s Lover, The State of Me, Black Sea Twilight, the first of the Jimmy First books, A Thread of Grace, and Lottery.  My favourite book from this list was probably A Thread of Grace.  I probably liked Jimmy First the least.

I think I might have read Heidi as a child but can’t remember.  And I have none of the books on this part of the list waiting to be read.  I’ve read part of The Curious Incident of The Dog In The Nighttime but put it down.  Not sure why, it was good.  I guess it just didn’t hold my attention.

The Harry Potter books are on this list because someone suggested them.  I must admit that despite being a huge Harry fan I’d not considered the disability aspects.  Obviously, Mad Eye Moody has a false leg (and his eye probably counts as a disability too), and Lupin’s being a werewolf most likely counts as well. The interesting thing that came up in a twitter discussion was that many people think Neville Longbottom is dyspraxic.  I don’t know enough about dyspraxia to comment.

The subtle disability is there if you look but not in your face and is totally normal is something I really liked to see in books.  Black Sea Twilight is another great book for that.  In fact in that one the main character comes to see her disability as a very positive trait of hers.

>Books With Disabled Characters (Part 3) #disability #amreading #books

>Part 3 of my not conclusive list of books which feature disabled characters.  I haven’t read all these books so the fact they are in this list doesn’t make for a recommendation.

41. Zoo Station by David Downing
42. A Prayer for Owen Meaney by John Irving
43. Trials for the Chalet School by Elinor M Brent Dyer
44. My Precious Bane
45. The Ship Who Searched Anne McCaffrey
46. Hotel World
47. Tell Me How The Wind Sounds
48. Izzy, Willy Nilly by Cynthia Voigt
49. The Rapture by Liz Jensen
50. Making Out Series by KA Applegate
51. An Equal Music by Vikram Seth
52. The Illustrated Mum by Jacqueline Wilson
53. Angel Blood by John Singleton
54. The Story of Beautiful Girl by Rachel Simon
55. The Burning Wire by Jeffery Deaver
56. The Wasp Factory by Iain Banks
57. House Rules by Jodi Picoult
58. Deaf Sentence by David Lodge
59. My Sister’s Keeper by Jodi Picoult
60. The Thousand Autumns of Jacob de Zoet by David Mitchell

I have read: Zoo Station, A Prayer for Owen Meaney, Trials for the Chalet School, House Rules and My Sister’s Keeper.  Of those I only picked one specifically because of it’s disability aspect.  The others either were recommended for other reasons, caught my eye or are by authors I like.

The Wasp Factory is on my to be read pile.  I bought it because it was on a list I’m picking books off of; I didn’t know it had a disability aspect.  The Thousand Autumns of Jacob de Zoet is also on my to be read pile as Dave Hingsburger recommended it and plans to run a disability book club on it.  He cautions that it’s a difficult read in places but despite that it looks good to me.

>Oxford Regatta 2011

>This past weekend was the Challenger English Championships 2011.  And as it was held at Oxford which is my “home” sailing club I was able to go.

I went up Friday to help get things ready but it ended up with my Dad helping out and me sitting in the club house chatting to other sailors who I only see at these regattas.  One of them gave me some really useful tips on racing skills so that was good and cleared up something I’d been confused about.  Also, gossip and catching up is always good.

Saturday started with the traditional pre-regatta bacon and sausage sarnie.  After the briefing I was told it was suitable weather for me to go out (the fleet was going but it’s up to the individual helm whether they go and the weather wasn’t great) so got ready.  We got me ready and on the water but unfortunately didn’t get far (we were only on the water about 2 minutes) when one of the safety crews came over and having already had to deal with two broken boats due to conditions told me that it wasn’t suitable for me and I should go in.  As that was someone who is knowledgable about the type of boat I sail and knows my limits, my buddy and I basically went “if he says we go in, we go in.”  Conditions had changed and those of us sailing with a buddy wouldn’t manage in what they’d got too.  Challengers are great because you can sail single handed or with someone on the side if you need it but technically they aren’t designed to have the buddy so that was it.  I sail alone most weeks but in the regattas take a buddy for support and confidence.

Sadly the conditions hadn’t improved after lunch so I didn’t get out then either.  I did enjoy my traditional regatta lunch of sausage chips and beans though and spent a pleasant afternoon chatting to people, reading and going for what for me is a long wheel.  I didn’t enjoy the bit when I was 2 minutes away from being back inside and there was torrential rain leading to me being a bit soggy!  When I later heard that during that storm the wind had gusted up to 37 MPH I was exceedingly glad I’d stayed on dry land.  More than glad.

I’d been told that there was more hope I’d be able to get out but that it was still going to be gusty so it wasn’t guaranteed.  But it all worked out!

Two races in the morning back to back and I managed to do both of those.  That’s only the third time I’ve managed to do that.  I wasn’t in the best position in the boat but it all worked out.  We seemed to manage the course really well.  As always I got lapped by the single sailors but I seemed to be much nearer the end of the course when they were half way round their next lap so that was better.

Following another plate of the traditional sausage chips and beans and a change of clothes it was back on the water for the afternoon.  We managed to get me in a much better position in the boat and fix the sail so it wasn’t as flappy.  Things seemed much improved all round.  The first race went well and I really enjoyed it.

 I was tired though and kept having short bursts of clonus which due to the position my ankle was in were painful (unusual as clonus doesn’t usually hurt but my ankle was in a v.weird position for me.).  I really wanted to try the 4th race but on grounds of being able to transfer and move the next day and recognising that this is my first year where I can physically do 3 races a day I decided discretion was the better part of valour.

I was a little bit worried by doing so I’d messed up my position in the rankings.  And it was close but I beat my next closest opponent by 1 point and came first in the Bronze Fleet.  Meaning that by some fluke I am the Challenger Class Association’s Bronze Fleet English Champion 2011.  Not something I could have predicted but I’m really pleased and proud.

 This is the trophy that the champion wins every year and then gets passed on the next year.  It’s made of wood and has a barometer in the middle of it with various brass plaques on it. At the top is the logo of the Challenger Class Association and at the bottom it says what the trophy is.  The other plaques have people’s names on, their home sailing club and when they one.  I’ll need to get myself one of those added.  It’s a bit of a funny shape and I’m wondering if that’s because it’s supposed to look like a sail.  I might ask.

This is the trophy that I get to keep.  It’s blue and originally I thought it was made of perspex but actually I now think it’s glass.  It has a medal engraved on it and in the middle of that is a silver inlay with the logo of Oxford Sailing Club.  Underneath is a bronze plaque, on the left of that it says 1st and then next to it it says Challenger Bronze Farmoor 2011 over 4 lines.

>Monday Music – Born This Way

>I first started thinking about using this song for a Monday Music last week after the comments made by Philip Davies in the House of Commons (he said that disabled people should work for less than minimum wage as they are less productive.)  People were tweeting how they were not worthless and it came to mind.  But in the end I tweeted a link to a video of Bruno Mars, Just The Way You Are.

Then it turned into a bit of a week when people make stupid comments about my disability.

First, earlier in the week someone was saying where the disabled loo was at the event and another person went “where’s the normal one?” to be honest I found that kinda funny but she was totally and utterly mortified when she realised what she’d said and apologised repeatedly.  I’m sure she was much more bothered than I was.

Then on Saturday I asked someone “so… how are you?”  The gestured at my wheelchair and then went “well… better than you.”  I said “I’m fine.” and she said “I know you are”  That did make me want to roll my eyes but it’s someone I know well who hasn’t been at all well, who didn’t look good and said it in such a stiff upper lip “mustn’t grumble” type way that I understood and let it go.

A bit later I was out for a bit of a wheel and an acquaintance stopped me to ask if I wanted a push.  I said no and we chatted a bit.  We’ve known each other a few years but only on and off and really don’t know each other that well.  Our conversation went a bit like this:

“How long have you been disabled?”

“From birth.  I’ve got CP the same as [a CPer we both know]”

“oh how tragic.”

“What?!”

“Well you were whole and then there was an accident with your birth and now you’re disabled”

“I’m whole now.  And anyway a lack of oxygen at birth was never gonna turn out well.  Better disabled than dead.”

She got called away at that point which was probably a good thing.  I was very annoyed by that conversation.  Being disabled doesn’t make me less of a person.  But I didn’t lose it with her because I didn’t feel I could and also I was shocked by the way the conversation had gone.  Now I’ve had time to think about it? Not happy at all.

I’m a sailor, a writer, a volunteer CAB adviser, a knitter, a friend, a daughter, a sister.  I’m messy, I’m opinionated, disorganised and loud.  I dye my hair crazy colours, spend too much time on twitter, read crappy fanfics and go to bed much too late.  I lose track of time reading too many books, like Doctor Who and want to start watching Grey’s Anatomy again.  I eat too much chocolate and drink too much coke.  I’m learning to crochet and have piles of unused scrapbooking materials.  And yes I have both depression and CP.  And I use a wheelchair.  But none of those make me any less of a person who spends all their time on their own two feet.  The most important thing?  I’m me.  I’m Emma.

So for this week’s Monday Music I’m sharing Born This Way.  Originally by Lady Gaga, this is the Glee version.  Mostly because the Lady Gaga video is really annoying (the song doesn’t start for several minutes into the video) but also because, basically it’s Glee.  I love the tops they wear too.

It doesn’t matter if you love him, or capital H-I-M 
Just put your paws up 
‘Cause you were born this way, baby 

My mama told me when I was young 
We are all born superstars 
She rolled my hair and put my lipstick on 
In the glass of her boudoir 

“There’s nothin’ wrong with lovin’ who you are” 
She said, “‘Cause He made you perfect, babe” 
“So hold your head up, girl and you you’ll go far, 
Listen to me when I say” 

I’m beautiful in my way, 
‘Cause God makes no mistakes 
I’m on the right track, baby 
I was born this way 

Don’t hide yourself in regret, 
Just love yourself and you’re set 
I’m on the right track, baby 
I was born this way 
(Born this way) 

Ooo, there ain’t no other way 
Baby, I was born this way 
Baby, I was born this way 
Ooo, there ain’t other way 
Baby, I was born this way 
I’m on the right track, baby 
I was born this way 

Don’t be a drag, just be a queen 
Don’t be a drag, just be a queen 
Don’t be a drag, just be a queen 
Don’t be! 

Give yourself prudence and love your friends 
Subway kid, rejoice the truth 
In the religion of the insecure 
I must be myself, respect my youth 

A different lover is not a sin 
Believe capital H-I-M (hey, hey, hey) 
I love my life, I love this record and 
Mi amore vole fe yah 

I’m beautiful in my way, 
‘Cause God makes no mistakes 
I’m on the right track, baby 
I was born this way 

Don’t hide yourself in regret, 
Just love yourself and you’re set 
I’m on the right track, baby 
I was born this way 

Ooo, there ain’t no other way 
Baby, I was born this way 
Baby, I was born this way 
Ooo, there ain’t other way 
Baby, I was born this way 
I’m on the right track, baby 
I was born this way 

Don’t be drag, just be a queen 
Whether you’re broke or evergreen 
You’re black, white, beige, chola descent 
You’re lebanese, you’re orient 
Whether life’s disabilities 
Left you outcast, bullied or teased 
Rejoice and love yourself today 
‘Cause baby, you were born this way 

No matter gay, straight or bi 
lesbian, transgendered life 
I’m on the right track, baby 
I was born to survive 
No matter black, white or beige 
chola or orient made 
I’m on the right track, baby 
I was born to be brave 

I’m beautiful in my way 
‘Cause God makes no mistakes 
I’m on the right track, baby 
I was born this way 

Don’t hide yourself in regret, 
Just love yourself and you’re set 
I’m on the right track, baby 
I was born this way, yeah! 

Ooo, there ain’t no other way 
Baby, I was born this way 
Baby, I was born this way 
Ooo, there ain’t other way 
Baby, I was born this way 
I’m on the right track, baby 
I was born this way 

I was born this way, hey! 
I was born this wayy, hey! 
I’m on the right track, baby 
I was born this way, hey! 

I was born this way, hey! 
I was born this way, hey! 
I’m on the right track, baby 
I was born this way, hey!