Loser Like Me

This entry may come across as cagy. It is deliberately so.

I’ve been dealing with a completely ridiculous access fail for the past 12 weeks. Basically it’s done a complete number on my self confidence and depression, serving as a weekly reminder every Thursday that I’m different and that I’m not worthy of what everyone else has. Twelve weeks of being told they’d made a decision to do X about including me and then suddenly two weeks later we’ll do Y or oh no Z instead.

It is dealt with. I’m not exactly enamoured with the reasonable adjustment type solution they’ve come with. Full the same as everyone else access wasn’t an impossible dream here and is obviously what I would have preferred. They’re aware that they’ve upset me and for the most part what it’s done to me. The fact that during one of our conversations I was accused of using my disability as an excuse being why I say “for the most part”

I’m not saying I no longer care. I’m just saying that this 12 week course is now up and I’m trying to dust myself off and move on.

Anyway I have been listening to a lot of my feel good songs to cheer me up. On Thursday I suddenly realised that Glee’s Loser Like Me should have been on that list. And after listening to it I thought “crip parody!”

Not sure it’s good but I enjoyed writing it…

You may think that I’m a zero
But hey everyone you ever see
Probably end up like me
You may say that I’m a freak show (I don’t care)
But hey give it a little time
Bet life’s gonna change your mind

All of the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me

Push me up against your rancour
And hey, all I do is shake it off
Go and talk to your boss
I’m not thinking bout you haters
Cos hey I could be a cripple star
I’ll see you if you get this far

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

Hey you over there
Keep the “L” up, up in the air
Hey you over there
Keep the “L” up ‘cos I don’t care
You can throw your distance
And you can throw your steps
Like a rocket just watch me go
Yeah
L O S E R
I can only be who I are

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

♥ Emma

A few quotes

I have a free quote of the day app on my iPad. It shows three quotes at a time. Today’s, yesterday’s and a random one. Today I thought all three were worth sharing.

“One man with courage makes a majority”
~ Andrew Jackson

“Success isn’t the result of spontaneous combustion. You must set yourself on fire.”
~ Arnold H Glasow

“For everything you miss you gain something else and for everything you gain you miss something else.”
~ Ralph Waldo Emerson

A year later

OK so it’s not quite a year later but it’s as close to a year later as I’ll get.

Last July I had my first lot of botox and that was then followed up with serial casting in August. The TL;DR version for anyone who doesn’t want to follow that link to all my entries on it is as follows. Serial casting was not a particularly fun experience but I saw a lot of improvement. Unfortunately not as much improvement as to get my feet into a “normal” position but the amount (approx 20 degrees improvement in range and position improvement) is agreed by everyone to be huge.

Yesterday I had my four monthly appt in spasticity clinic.  It was a good appointment but has had me, my sister, both of my parents and one of my besties going “oh, I didn’t expect that”

It was the quickest I’ve ever been in and out of that hospital.  Of course a big part of that is the fact I didn’t go on hospital transport but my dad took me.  Spasiticity clinic is a physio, a nurse and a neurologist.  And my neurologist always runs really late.  It doesn’t both me because although I know people who can’t stand the guy I’ve always felt like I get all the time I need, I’m not rushed and I can’t ask a stupid question.  Plus he’s very open to hearing how it is for me. Anyway I had I think the second or third appt of the clinic but I was the first patient to turn up (I was ten mins early). I wheeled in and she said she’d call the drs down. I ended up going in a few minutes early and we were at the car at 10.05 having made a loo stop on the way out (my appt was 9.40)

My physio from last year is on maternity leave I think and I don’t think I’d met the one that was there before. She had a good look at my legs/feet in my chair and then the Prof came in and asked if they could examine me on the bed. He had I think two observers with him, not sure who they were.

The really good news is that I have maintained all of the improvements I got from the casting.  That’s huge. Really huge. I think it’s unexpected too, usually a there would be some deteriorate if not complete deterioration expected (I think). Keep up with the standing frame and increase the time if possible. Work on a goal of an hour. My feet haven’t started turning in again like I thought they might have so no new contracture.

But it is now official that I have both spasticity and contractures. That’s just basically confirmation of something we’ve all suspected for a long time.  I am being referred for surgical assessment to see if it’s time for a tendon release proceedure on each of my ankles.

Growing up I didn’t see a neurologist, I was assessed once or twice a year by an orthopaedic surgeon.  I saw a really lovely man who always greeted me with “hello sunshine” and made me feel special. Most of my friends with CP saw a different consultant but I was born with a hip problem (dislocation) and was seeing my consultant about that before my CP diagnosis so I stuck with him.

The surgeon I’m being referred to? Is the one that my friends always went to.  I’ve heard very good things about him. So that’s good.  But I am a little sad that my guy has retired and I can’t go see him

The aim of a release would be to help maintain my independence and improve my standing.  The issue is that I’ve had it done twice as a child (that was amusing, I left my dad in the waiting room but when the prof started asking about previous surgeries I suggested getting him in as he’d know better then me. So he did but then basically didn’t ask Dad any questions) and no one there seemed sure if a third go is possible. I need a definite answer abou that before any decision because with CP contractures will always develop. And I’m not sure I want to use my last shot at release surgery a 30 when I’m managing well and at 35 or 40 or later I might need it more. But then if I do decline to have it now am I running the risk that at 40 I need it but things have deteriorated to such a point it can’t be done?

Lots to think about.  And a few month wait to clinic I think.

In the meantime I had six more lovely botox injections and I’ll wait to see what the surgeon says. That will be a joint clinic with my neuro. Depending on when it comes through I may skip my next spasticity clinic appt.  Basically if it’s in a couple of months or say six months then I’ll go back in four months as planned for more jabs. But if I see the surgeon around the time I’d be due jabs they’ll combine giving me them with it even if it’s not in spasticity clinic.

Random Bullet Points of Life

I have four part written but never finished blog posts. At least one will never see the light of day the Internet.

Something is going on with my left foot. I fear it’s a new contracture. Am at spasticity clinic later in the week so it’s good timing at least.

Soph and I bought Dad the DVD boxset of The Bridge between us for Fathers Day. I thought it sounded like it wasn’t my thing but I was hooked I tell you. Hooked. We watched four episodes and I can. not. wait. to see the rest. I thought the subtitles would put me off but they didn’t.

I’m still fighting access fail. It’s the ultimate embodiment of the saying “one step forwards and two steps back”

I really miss having a working washing machine. But it’s gonna be a while longer before that’s resolved.

Feels like I’ve been being a bad friend lately 🙁

Life is very up and down at the moment.

Day by Day

The situation with my weight is a subject I need to blog about in more detail. There’s been a lot going on there both good and bad. And it’s been one of the major reasons I’ve been struggling with my depression lately.

But because I’m trying hard to remember the big picture here’s a few things I want to remember. Good things to look back on when it all gets too much and I think I can’t do it any more.

I’ve been consistently gaining weight for about a year. For the past seven weeks I’ve maintained it.

I’ve been exercising a lot more lately.

I’ve been using my fitness pal to track my eating. I could do with committing to it on a daily basis again but I am thinking about my eating more and trying to make better choices. Although those aren’t always the best possible choice.

I’m trying to adopt a day by day attitude. I decide what I’m going to do today and I stick to it. That’s very very new but it’s a step in the right direction.

Maybe there’s a little spark of positivity that I’m beginning to feel once again?

There for the most deserving

This was a really good post in my opinion.  But wordpress ate it and it published blank with all the points I spent ages making gone off into the ether and not here on my blog where they should be.

It was about my friend who after being very ill, spending time in intensive care with multi organ failure, having nearly six months off work and being diagnosed with a life long condition.  And about how she’s new to the world of disability, support, benefits and all that entailled.  But already learning about not being “disabled enough”.  Being told by people that she should be able to get help but then discovering actually she can’t.

And it was about Karen Sherlock.  I didn’t know Karen but she was a disability campaigner.  She had diabetes, was visually impaired, was about to go on dalysis and was being considered for a transplant.  Karen claimed ESA and fought a long battle over many months to get moved from the WRAG to the support group.  ATOS considered her fit for work despite her many problems meaning she didn’t leave the house unless absolutely necessary and never alone.  She had medicals, filled out forms, there were many problems and mistakes a long the way and it was to put it bluntly a battle she shouldn’t have had to fight..

Karen eventually won that battle and was placed into the support group as she should have been originally.

She died two weeks later.

I’ve probably not made my points as well as I had in my original blog entry.  They certainly don’t have as much detail.  But I just wanted to welcome you to this new world.

It’s called Britain in 2012.  It’s a world where “the most deserving” get the help they need.  But where no one knows just who this “most deserving” group of people actually are.  And where some of us are beginning to doub they even exist.

One Perfect Summer by Paige Toon

Simon and Schuster sent me a copy of One Perfect Summer by Paige Toon to review. It’s actually the second of her books that I’ve read and the second that I’ve had to review. The first was Baby Be Mine which I read last summer. I said in that review that I’d like to read more of her books and having now done so I would definitely say that was the right decision.

Here’s the synopsis:
‘Do you still love him?’ Every second of every minute of every hour of every day…Alice is18 and about to start university while Joe’s life is seemingly going nowhere. A Dorset summer, a chance meeting, and the two of them fall into step as if they have known each other forever. But their idyll is shattered, suddenly, unexpectedly. Alice heads off to Cambridge and slowly picks up the pieces of her broken heart. Joe is gone; she cannot find him. When she catches the attention of Lukas – gorgeous, gifted, rich boy Lukas – she is carried along by his charm, swept up in his ambitious plans for a future together. Then Joe is there, once more, but out of reach in a way that Alice could never have imagined. Life has moved on, the divide between them is now so great. Surely it is far too late to relive those perfect summer days of long ago?

I read this in an entire day. Sitting outside until the light was practically gone and then regretfully going inside to read the last ten or so pages. I took it with me to the first day of the Oxford regatta this year. I didn’t get out on the water that day due to conditions but reading this made up for it. I had to take a different book on day two and I don’t think that even made it out of my bag. In fact I’m not sure I can remember what it was! I did get on the water that day and got thoroughly soaked (seriously after the second time I sailed they started hoisting me back into my chair and water literally dripped off of the sling.). I came third of four at my level this year.

Anyway, back to the book. The beginning section of this really feels like YA. Good YA which is perfect for this as at that point Alice and Joe are teenagers and thats the perfect feel for that part. On the whole this book is chicklit but not the fluffiest chicklit I’ve ever read. it also had some really gritty moments well handled and adding a dimension that brought the book and characters even more to life. Fluffy chicklit with substance would probably be a good description for this book.

I loved the characters apart from the one or two you obviously (in my opinion) weren’t supposed to like. And even those that dislike came on slowly as they showed their “true colours”. They were realistic people not parodied villains with no redeeming features.

The relationships between Alice and her friends was something else I really liked about this book. At times I wished I had a friend like Jessie and at others I wanted to shout at them to notice that Alice needed them and reach out and hug her. Good stuff.

There was one tiny bit I thought maybe wasn’t very realistic but I didn’t realise that until I was writing this review. It works really well in the concept of the book, isn’t glaring and I’m not sure how the book would have ended if not for that. And it had the perfect ending. Tying up just enough of the lose ends but at the same time leaving you wondering just what came next and wanting more.

I think this is a good book for a summer day and having read it I still want to read more by Paige Toon.

Quote

“Who I am is valuable because I exist. The truth is we don’t have to do a thing in order to validate ourselves as worthy and valuable. You are not a human doing. You are a human being and being means not identifying yourself by what you do and what you accomplish”.
~ Wayne Dyer